{"title":"Causes","description":"\u003cmeta charset=\"utf-8\"\u003e\n\u003cdiv class=\"no-of-blk\" id=\"generalintro\" data-mce-fragment=\"1\"\u003e\n\u003cdiv class=\"row-height\" data-mce-fragment=\"1\"\u003e\n\u003ch1 class=\"col-sm-height\" data-mce-fragment=\"1\"\u003eCauses of Rare Diseases\u003c\/h1\u003e\n\u003cdiv class=\"col-sm-height\" data-mce-fragment=\"1\"\u003eThere are hundreds of people close to us seeking medical funding support. With your generosity and their courage, together we can make miracles happen.\u003cbr data-mce-fragment=\"1\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e","products":[{"product_id":"脊髓肌肉萎縮女孩-越過生死線-盼做女作家-1","title":"脊髓肌肉萎縮女孩 - 姚心悅","description":"\u003ch2\u003e\n\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e脊髓肌肉萎縮女孩\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e越過生死線  盼做女作家\u003c\/span\u003e\n\u003c\/h2\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-01.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch4\u003e「我叫姚心悅，今年十三歲，我有脊髓肌肉萎縮症第一型。」「我鍾意睇書、寫小故事，希望大個可以做一個出色嘅作家；想一家人去多啲旅行……」一個一個的夢想，並未因惡疾而被磨蝕。\u003cbr\u003e她的故事，始於一個陌生的罕見病。訪問，始於學校的床上、終結於家中的床上；皆因她連坐立的能力也欠奉。十三年前迎來首位家庭成員，爸媽滿心期待,豈料同時迎來「分分鐘無命」的罕見病。\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-02.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-03.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e醫生評估 僅八歲命\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「心悅半歲到同其他BB唔一樣；其他BB識轉身，郁吓手腳，佢就完全唔識。」最終，她八、九個月大時被確診。媽媽對此毫無概念，只見女兒肥肥白白、精靈聰明，還未意識到嚴重性。後來屢次送院，小病也幾乎奪去性命，才驚覺死亡是這麼近那麼遠。 \u003cbr\u003e \u003cbr\u003e媽媽回想心悅兩歲時經常生病，「差唔多一兩個禮拜就入一次院，一入就ICU（深切治療部），醫生同我講，佢得八歲命。」她一片空白，只懂說「係咪㗎？」姚太負荷不了，選擇不作多想：「今次病好咗先算，唔好理下次喇。」\u003cbr\u003e「點算呀，不停咁問點算，真係唔知點算㗎！」每次入院，心悅總得面對抽痰、呼吸困難等痛楚，看着一瓶瓶只見鮮血的痰樽，媽媽除了陪伴，就是心痛。\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「有一絲希望都同我救！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e十多年來，一直深印於媽媽腦海的，是不下一次醫生抓住她雙手：「今晚有咩事救唔救？」爸媽哪有猶豫空間：「救！有一絲希望都同我救！」周而復始，輾轉反側「今晚唔會啩？」的煎熬模式，難以止息。而媽媽的「24小時戒備」模式，亦無間斷啟動中。\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-04.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch4\u003e非常緊張的媽媽，不諱言近兩三年才正式接受，懂得放鬆一點，「以前成日喊；你哋傷風感冒，千祈咪嚟我屋企，我同你反面㗎！佢一有傷風感冒細菌就病，肺炎就唞唔到氣，一病就冇咗條命！死路一條！以前日日擔心身體，今日吹乜嘢風我都會睇定。帶佢出街情願孭多啲嘢……」\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e淺眠多年 做狗都開心\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我對自己嘅要求真係一百分！我真係唔俾自己出少少差錯，冇咗個女嗰條命會好後悔！」如廁、造口餵食、洗澡更衣、服藥抽痰、戴呼吸機…等，絕不假手於人。每晚睡在廳中女兒旁的地板上，只為女兒轉身七、八次，免她半身麻痺或腰痛，多年處於淺眠狀態。若沒媽媽在旁，心悅不諱言：「唔知點算。」\u003cbr\u003e\u003cbr\u003e心悅入院時曾笑說：「阿媽你今晚可以瞓得好舒服！」媽媽指着她倆的共同空間自嘲「辛苦命」：「我反而唔舒服！我女瞓呢度，我瞓呢度，係最安心、最舒服嘅。」爸爸看在眼裏也笑言：「見你做到成隻狗咁都開心。」\u003cbr\u003e眼前這位忙個不停的媽媽，身形瘦小，卻強大如樹蔭，為女兒遮風擋雨，陪着女兒咬緊牙關，勇敢地跨過一個又一個難關。好不容易，一起等到這無藥可治的罕見病終現曙光。\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-05.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\" style=\"height: 274.313px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 254.719px;\"\u003e\n\u003ctd style=\"height: 254.719px;\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e接受治療 盼增壽命\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e2018年，心悅接受新的注射療程，雖非根治病症，但盼減慢退化及增強抵抗力。「打咗6針，心悅好明顯抵抗力好咗，精神啲。以前一個月病兩次，而家大吉利是講句，一年都唔病一次。」媽媽笑說：「我估佢三、四十歲命都有啦！」\u003cbr\u003e惟心悅必須增磅達標，始能接受注射治療。一年間，她由27公斤增至39.4公斤。由於她無法坐立，輪椅需設有調較坐立及仰卧角度的功能；且為應付其增磅後的尺寸，其大型輪椅於很多交通工具或設施都難以容納，「扯高佢先可以入，人多或慢，四五分鐘對心悅唞氣嚟講，係好辛苦嘅。」為此，他們只能減少外出。\u003cbr\u003e圖書館看書、公園散步、游水當作水療等，心悅最愛的活動，也因此而無法進行。「希望有架輕便啲可摺合輪椅，就可以出街、上救護車……但至少都成四、五萬。」其實，心悅需長期依靠各式醫療器材，一家四口重擔全落於當文員的爸爸身上，媽媽唯有盡量節省，一次性的醫療消耗品，都會清洗乾淨循環再用。\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 19.5938px;\"\u003e\n\u003ctd style=\"height: 19.5938px;\"\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-06.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/p\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「兩母女生死一齊，幾幸福呀」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e生活不容易，但一句『真係多謝你做我阿媽』，一切都是值得。笑至瞇眼的媽媽即回一句：『真係好多謝你做我個女』，照顧佢幾辛苦我都開心」。媽媽直言，「日日都好開心！佢講好多好叻嘅說話氹你，好識講笑，我又會講笑，我哋兩個好開心嘅。」媽媽還「大爆」二人的共同興趣——「煲韓劇」，「喊到唏哩嘩啦越鍾意…」她倆不禁相視而笑。\u003c\/h4\u003e\n\u003ch4\u003e自言「大把青春、死亡係好遙遠」的心悅；畢竟死亡曾擦身而過，她坦言：「有啲驚嘅」。她忽發奇想：「我如果有四十歲，媽咪應該七十歲到啦，咁大家一齊死就啱啱好」；媽媽聽到「一齊死」竟道：「都好呀，兩母女生生死死一齊，幾幸福呀。」\u003cbr\u003e內斂的心悅，很多事情不願說出口，彆扭一番始開口「錫媽咪」：「多謝你照顧咗我咁多年，辛苦晒。」媽媽秒回：「有排啦，十幾年算得係咩呀，嚟緊仲有三十年照顧呀。」說罷，母女再互相依偎。\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-07.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不一樣的校園生活\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e跟一般少女無異，心悅閒時愛跟同學聊個不亦樂乎；唯獨午飯時無法跟他人進食，因她需要到護理間由腹部造口「吊奶」（點滴注入營養奶），需時約四十五分鐘。基本課堂外，心悅還需進行職業治療及物理治療等項目，縱使練至滿頭大汗，她仍盡最大努力，老師們均大讚「好乖、好合作」。\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-08.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-09.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e「有時都好想食薯片紫菜，但驚落錯格，隨時肺炎好危險；只可間中試少少…乜都玩唔到，例如刺激嘅機動遊戲，好想玩但玩唔到。」更甚是，「成日郁唔到，如果腰痛自己郁唔到一定要人幫，好似好麻煩人咁。」旁人眼光亦難以承受：「成日望住我，唔知點解要望住我。」經媽媽開導後，心悅已學懂被注視時，與對方微笑打招呼，化解尷尬。\u003cbr\u003e媽媽慶幸心悅療程後抵抗力提升，如今媽媽盼她勤力讀書，找到人生目標，「將來做到自己想做嘅嘢」。心悅夢想成為「最出色嘅作家」，最愛寫作及閱讀，藉着寫故事實現不可能的事。「有陣時諗嘅嘢自己又做唔到，咪寫喺入面囉。」媽媽「爆料」：「因為心悅打機好勁，細佬一輸咗就喊…」她就將弟弟的有趣軼事代入故事當中。\u003cbr\u003e\u003cbr\u003e媽媽鼓勵她朝着目標進發，「達唔達到都唔緊要，不過要盡最大嘅努力去完成。」此刻，心悅還想做的，就是「一家人去多啲旅行囉。」媽媽知道女兒喜歡出外走走看看，縱使照顧起來感吃力，但還是扭盡六壬；奈何，沒有合適的輪椅，只可待在家中；「而家一到假期，真係無地方可去。」\u003c\/h4\u003e\n\u003cp\u003e\u003cspan\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-10.jpg?v=1773821335\" alt=\"\"\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003c\/div\u003e\n\u003cstyle\u003e\n            .adaptive-table {\n            background-color: #ccc;; \n            color: black;\n            border-collapse: collapse;\n            width: auto;\n            margin: 0 auto;\n        }\n        .adaptive-table th, .adaptive-table td {\n            border: 1px solid white;\n            padding: 8px 12px; \n            text-align: center;\n            height: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ctable class=\"adaptive-table\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4 style=\"text-align: left;\"\u003e認識罕見病 - 甚麼是「脊髓肌肉萎縮」(SMA) ？\u003c\/h4\u003e\n\u003ch4 style=\"text-align: left;\"\u003e它是一群由脊髓前角神經細胞 (稱為運動神經元) 衰退，導致肌肉無力和萎縮的遺傳性神經肌肉疾病；身體各處肌肉退化，四肢及頸項無力，基本動作如：轉身、坐立、步行、控制頭、頸肌肉等均不行。嚴重者，其吸吮、咳嗽及吞嚥能力也很弱，患者的生存機會要視乎他們的呼吸系統肌肉的退化程度而定。\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪及撰文：黃安廸、梁劍紅\u003cbr\u003e\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e\u003cbr\u003e攝影：Sea.Pho.Yea\u003cbr\u003e\u003cbr\u003e影片製作：Lifewire、Sea.Pho.Yea、Ken Mok、Ava Chan\u003c\/h4\u003e\n\u003ch4\u003e(部份照片由受訪者提供)\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"姚心悅","offer_id":43205997199478,"sku":null,"price":160.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3613-00_0964121c-c848-4fb3-a3ec-3bbc42674b73.jpg?v=1773823770"},{"product_id":"莫皓翔-脊柱則彎","title":"Scoliosis - Mok Ho Cheung","description":"\u003cp\u003e\u003cmeta charset=\"utf-8\"\u003e\u003cmeta charset=\"utf-8\"\u003e\u003cspan\u003e8-year-old Mok Ho Cheung always has a carefree smile on his face, making it hard to imagine that his small body carries a visibly protruding spine. Four years ago,\u0026nbsp;Ho Cheung was diagnosed with scoliosis, which had already reached 60 degrees and soon worsened to nearly 70 degrees, far exceeding the critical 40-degree threshold, necessitating urgent surgery.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eAt just four and a half years old, he underwent his first surgery, which was successful. However, bad news emerged a year later: inflammation occurred at the surgical site, requiring a second surgery sooner than expected. Subsequently, the screws loosened, causing the \"growing rods\" inside his body to protrude, making it impossible for Haoxiang to even walk due to the pain. \"He couldn't really sleep; it hurt so much, he would cry out,\" his mother recalled with tearful eyes.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003c\/p\u003e\n\u003ch3 class=\"txt-highlight\"\u003eEverything… was just the beginning\u003c\/h3\u003e\n\u003cp\u003e\u003cspan\u003eDue to Ho Cheung's growth rate, he needs to undergo surgery to replace the \"growing rods\" every six months to two years. Doctors cannot predict how many surgeries he will need, and his mother neither knows nor dares to imagine how much more pain her son will have to endure. She is only certain that each incision not only pierces Haoxiang's skin but also stabs her own heart and lungs.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003c\/p\u003e\n\u003ch3 class=\"txt-highlight\"\u003eA Decision: Crossroads in Life\u003c\/h3\u003e\n\u003cp\u003e\u003cspan\u003eHo Cheung, whose body is supported by \"growing rods,\" can choose to stop replacing them early, between the ages of 15 and 16. However, the cost of enduring two fewer surgeries is that he will no longer be able to grow taller. At this crossroads in life, Mrs. Mok candidly admitted that after her son's two surgeries, his walking stability improved, and his car sickness decreased.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e\"He can't even carry his backpack!\" Basically, Ho Cheung cannot carry heavy objects. When he goes out, he can only carry a small bottle of water; carrying a liter would be his limit in 10 minutes. He would vomit even on short car rides, and his protruding spine prevents him from leaning back against the seat, causing many inconveniences in his daily life.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003c\/p\u003e\n\u003ch3 class=\"txt-highlight\"\u003eHead full of fibroids\u003c\/h3\u003e\n\u003cp\u003e\u003cspan\u003eAs a child, due to swelling on his forehead, an MRI scan revealed hydrocephalus and benign fibroids, which followed the nerves. Fortunately, this did not affect the surgery, and he currently has monthly follow-up appointments. \"He's not very stable when he walks, he falls easily, and even more so when he runs...\" But the resilient Ho Cheung gets up strong every time he falls, continuing to chase in the marathon of life.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003c\/p\u003e\n\u003ch3 class=\"txt-highlight\"\u003eI'm no different from other kids\u003c\/h3\u003e\n\u003cp\u003e\u003cspan\u003eAlthough Ho Cheung was a bit shy in front of the camera, his active nature was hard to conceal behind it. Despite giving only brief \"no,\" \"not really,\" and \"I don't know\" answers during the interview, he immediately became incredibly excited when kicking a ball. When the interview team was exhausted, he kept saying, \"Let's keep playing!\" He also unconsciously kept posing, declaring that he would become a football king in the future! Looking at his smiling face, we realized that his childlike innocence had not been eroded by illness.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eHowever, as a mother, she has to be extra vigilant. \"Some children see something protruding from his back and might pat or even hit it. We have to watch him carefully when playing outside.\"\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003c\/p\u003e\n\u003ch3 class=\"txt-highlight\"\u003eSupporting the long road to recovery\u003c\/h3\u003e\n\u003cp\u003eIn addition to frequently going in and out of the hospital to care for \u003cspan\u003eHo Cheung\u003c\/span\u003e, Mrs. Mok also has to look after her young daughter. The life of \"nursing the sick and raising the young\" is already exhausting, and she still has to cope with expensive medical bills; just replacing one pair of \"growing rods\" costs $117,000. Mental and physical exhaustion is undoubtedly a true description of Mrs. Mo's life, leaving its mark on her weathered face.\u003cbr\u003e\u003cbr\u003eIndeed, if you are willing to lend a helping hand, you can provide support to this lively and cheerful child, accompanying him on his long journey to recovery.\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":"Mok Ho Cheung ","offer_id":43196092055670,"sku":null,"price":150.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/2671_1.jpg?v=1773367468"},{"product_id":"jiwei-hk-university-graduate-jiang-weikun","title":"肌萎港大畢業生 - 蔣衞錕","description":"\u003cdiv class=\"widget xhec\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e由小學突然經常跌倒開始，\u003c\/strong\u003e\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e杜興氏肌肉營養不良症迫衞錕學懂接受，\u003c\/strong\u003e\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e接受以輪椅為伴、做不了夢想職業、拿不起相機……\u003c\/strong\u003e\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e但卻不能令他接受 ---- 放棄：\u003c\/strong\u003e\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e「好多嘢都可以嘗試，唔好因為個病就覺得所有嘢都做唔到。」\u003c\/strong\u003e\u003c\/span\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_1Medium.jpg?v=1773374565\" alt=\"\"\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e3年愛情敵不過罕病考驗\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n「分手痛定呢個病痛啲？」「嘩…呢個呀…」24歲的蔣衞錕（Devin）笑着想了一會，「應該係分手，因為分手都係因爲呢個病。」纏繞他十多年的杜興氏肌肉營養不良症，令三年感情畫上句號。「當時同佢講咗好多感受，有平靜講嘅嘢、都有撕心裂肺講嘅嘢。」\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cmeta charset=\"utf-8\"\u003e「可能佢(女友)越大越覺得，想俾人照顧多啲，而唔係一味照顧我。」Devin無奈地笑笑。分手四個月(以採訪當天計)，傷口仍在滴血，「個病本身都滴緊血……哈哈」，笑聲背後，其實他仍耿耿於懷，「責怪自己點解有呢個病，責怪個天。」\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cbr\u003e\n\u003ctable width=\"100%\" style=\"width: 100.087%; height: 441.305px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 441.305px;\"\u003e\n\u003ctd style=\"width: 49.9124%; height: 441.305px;\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_2Medium.jpg?v=1773374566\" alt=\"\"\u003e\u003c\/td\u003e\n\u003ctd style=\"width: 49.9124%; height: 441.305px;\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_3.jpg?v=1773368673\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cbr\u003e\u003cbr\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e到處尋醫求真相\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e小時候的Devin與其他小朋友無異。但到初小時，開始會無端脚軟跌倒。家人帶他到明愛醫院求醫，他還記得，當時醫生本擬化驗肌肉，但因他怕痛，「因為醫生要用啲好粗嘅針拮落去抽組織，最後都冇抽到。」後來抽血化驗，在9歲時診斷患有杜興氏肌肉營養不良症。\u003cbr\u003e\u003cbr\u003e「當時醫生都答唔到我(身體)會差到咩程度。」家人從醫生口中得知Devin身體會一直走下坡，無論是肌肉力量還是心肺功能，最多只能活到廿多三十歲，於是帶他四出求醫，又到內地睇中醫，食中藥調理，但都無補於事。當現實改變不到，「面對」是他們唯一的出路。\u003cbr\u003e\u003cbr\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_4.jpg?v=1773374874\" alt=\"\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e \u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch2\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e小孩變大人\u003c\/span\u003e\u003cbr\u003e\u003c\/strong\u003e\u003c\/h2\u003e\n\u003cp\u003e當時還是小學生的Devin便已學會安慰自己，「一開始一定會有唔開心嘅時候，但係有同自己講，就算唔開心都改變唔到啲咩，反而就叫自己唔好成日唔開心。」\u003cbr\u003e\u003cbr\u003e疾病帶來的無奈，令Devin比同齡人成熟。從患病那一刻起，他便被迫適應與別人的不同。小學上體育堂時，「都唔係幾做到」，其他同學做劇烈運動時，他只能坐在一旁觀看。同學上樓梯，他要搭?。\u003cbr\u003e\u003cbr\u003e「試過自己跌低，起唔番身，覺得好無助，喐又喐唔到，都有覺得點解咁唔公平。」中一更開始要坐輪椅，「一開始比較抗拒，就算行得好辛苦，都會一返到學校就泊低輪椅，喺校內就自己行。好慢咁行，有時要人扶。」奈何肌肉逐漸萎縮，他始終要接受坐輪椅直接到課室。\u003c\/p\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_5Medium.jpg?v=1773374566\" alt=\"\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003ch2\u003e\u003cstrong\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003e主流學校是首選 \u003c\/span\u003e\u003c\/strong\u003e\u003c\/h2\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e其實升中時，醫生建議他選擇特殊學校，因為無論在治療還是設施方面，都有更佳資源。但他幾經掙扎後，最終選擇入讀學業進度較快的主流學校。\u003cbr\u003e\u003cbr\u003e「雖然我四肢或肌肉唔及佢哋，但(學業)進度嚟講係跟到嘅。同埋將來讀完書，都要出社會同其他人接觸啦。」 \u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_6.jpg?v=1773374874\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e \u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e同學是面對病情的解藥\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_7Medium.jpg?v=1773374566\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e事實證明他的決定正確，「學校識到啲朋友，個人就會開心返。」他記得最溫暖的一次是大家到郊野公園為功課做拍攝，數個同學合力把Devin與輪椅搬落石級。\u003cbr\u003e\u003cbr\u003e朋友的鼓勵和幫助，支持他撐過每個難受時刻。\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e \u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e努力與自律是日常\u003c\/span\u003e\u003c\/strong\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e病情帶來的體力不足影響學習，他願意付出比別人更多的努力去克服：溫習時容易疲憊不入腦？ 他便投入更多時間，以達到相同效果；寫字較慢？他便申請考試加時作答。\u003cbr\u003e\u003cbr\u003e他的努力也獲得回報–圓夢入讀心儀的港大生物科技。「(選這科)除咗因為興趣，最主要都係因為呢個病，想了解多啲個病嘅成因、有無其他治療方法。」但現實卻叫他失望 -- 現時的科技還沒有根治方法，只能用藥物減慢退化速度。\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_8Medium.jpg?v=1773374565\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_9Medium.jpg?v=1773374565\" alt=\"\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cspan class=\"grey-sm-txt-lifwire\"\u003e\u003cbr\u003e\u003c\/span\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e面對困境 設法解決\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e畢業，也是另一個夢碎時刻。「由小學至中學嗰陣都係想做實驗室相關工作，但後來知道自己身體真係負荷唔到，就冇再諗。」他轉向包容度較高的公營機構求職。\u003cbr\u003e\u003cbr\u003e「中學嗰陣都面試過好多次，但都係冇回音。」但他堅持迎難而上。今次在一年內找到一份在慈善組織的文職工作。他自言最欣賞自己這一點：「遇到困難唔會去逃避，我會諗辦法去解決。」\u003cbr\u003e\u003cbr\u003e這份在庇護工場宿舍擔任電腦職位的工作，讓他幫助更多有需要的人。「雖然自己都有病，但其實呢個世界仲有好多人嚴重過我，有時會諗，自己算係好彩，依然有能力幫助佢哋，就會覺得有滿足感。」\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_10Medium.jpg?v=1773374566\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e \u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e手機代替相機\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_11Medium.jpg?v=1773374566\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_12Medium.jpg?v=1773374565\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e愛看電影，也愛攝影的他，以前會特意到景點影相、靜候最佳時刻拍攝日落，但隨着病情發展，他漸漸難以提起沉甸甸的相機，惟有改用手機；但退化的肌肉對他施加的限制越來越多，「以前隻手靈活啲，易啲遷就角度，而家難好多，所以影少咗相。」\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cbr\u003e團隊建議他在輪椅上安裝腳架，「以前身體喐到多啲，影多啲角度，但依家就算裝咗腳架，啲角度都好有限。」\u003cbr\u003e\u003cbr\u003e一堆作品中，他最難忘的是在西環碼頭拍攝的一幅，「因為相入面有個人又係影緊相，揸住相機」，「人哋好似咁輕鬆就拎起部機影」，言語間透出淡淡的羡慕。\u003cbr\u003e \u003cbr\u003e他把與家人去台灣旅行時拍攝的淡水風景設定為手機屏幕。對他來說，攝影不僅是一種愛好，更多的是一種生活方式和對世界的觀察。每當他提起手機，捕捉到那些瞬間的美好，都會有一種滿足感，通過攝影，記錄他與這個世界的溝通。\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e接受現實 珍惜當下\u003c\/span\u003e\u003c\/strong\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_13Medium.jpg?v=1773374565\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_14Medium.jpg?v=1773374566\" alt=\"\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e除了提起相機，一些以前做得到的拿筷子、扭開門鎖或拉厠所門，Devin已越來越吃力。雖然能自行出入上班，但路上面對很多挑戰，例如㩒?。「以前可以一隻手就咁㩒到，依家可能要用另外一隻手去幫。你出街就要面對呢啲嘢，有啲情況要自己諗辦法做到。」\u003cbr\u003e\u003cbr\u003e日常生活也需要旁人協助，例如睡前由父母幫忙戴上呼吸機、攙扶起床、妹妹幫忙拿東西。眼見父母近年不時腰骨、手脚痛，「有時都覺得對唔住佢哋，都會唔開心。」父母沒有因爲Devin的與別不同而特別呵護，也從不抱怨，把他與正讀中一、健康的妹妹一視同仁。「雖然我身體上未必可以幫到啲咩，其他方面都會照顧一下阿妹。」「讀書嗰啲佢唔駛我幫，佢仲叻過我。」嘴角掩不住對妹妹的引以自豪。\u003cbr\u003e\u003cbr\u003e眼看身體逐漸衰弱，但他並不認爲生命在倒數，「知道自己一定會差落去，唔會去估自己有幾長命，因爲呢啲都估唔到」，「順其自然囉，冇辦法。」此刻說得輕鬆，背後卻是經過十多年的沉澱而成。\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch2 class=\"table-col half-col\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e擬繼續進修 盼做社工\u003c\/span\u003e\u003c\/strong\u003e\u003c\/h2\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003eDevin對生命仍然充滿嚮往，規劃未來，考慮攻讀碩士成為社工，既可助人，又有滿足感。他現在也會出席講座，分享經歷啓發他人。「我記得有一個未坐輪椅嘅病人，佢接受唔到將來坐輪椅。我話畀佢聽點樣諗件事，唔需要抗拒。」\u003cbr\u003e\u003cbr\u003e他鼓勵其他罕見病患者，遇到困難不要放棄，也不要覺得自己一無是處，每個人都有值得欣賞的地方。「個病雖然係改變唔到，但仲有好多你想做嘅嘢，都可以嘗試，唔好因為個病就覺得所有嘢都做唔到。」\u003c\/div\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_15Medium.jpg?v=1773374565\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e採訪、撰文：楊樂儀、陳偉麒\u003cbr\u003e編審：梁劍紅、陳偉麒\u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e部份照片由受訪者提供\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\n\u003chr\u003e\n\u003cp\u003e\u003cstrong\u003e所需儀器靠租借\u003c\/strong\u003e\u003c\/p\u003e\n\u003cp style=\"text-align: center;\"\u003e物理治療師每星期上門替Devin做一個半小時治療，以減慢肌肉力量衰退，所以拉筋床和脚架是必備裝置。\u003cbr\u003e購置器材及醫療費令Devin的生活百上加斤，例如一張輪椅價值十多萬、睡覺時要用的呼吸機動輒要數萬元，幸好有些儀器可以租借，比較划算。「呼吸機就算壞咗，你淨係畀嗰個月租就得，唔使畀維修費。」\u003cbr\u003e\u003c\/p\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"蔣衞錕","offer_id":43196016230518,"sku":null,"price":200.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3627_main.jpg?v=1773368673"},{"product_id":"思想被困身軀-陳家琦","title":"Mind Trapped in Body - Ka-ki","description":"\u003ch4\u003e\u003cspan class=\"txt-highlight\"\u003e\"Do you want pork chop rice or chicken chop rice? Look this way for pork chop rice,\" her mother says, shaking her left fist in front of Ka-ki’s eyes. \"And look this way for chicken chop rice,\" she adds, shaking her right fist. Lying on the sofa, unable to speak or control her body, Chen Ka-ki scans her mother’s hands back and forth before finally resting her gaze on the left. With her eyes, she tells her mother her choice.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan class=\"txt-highlight\"\u003eWhether it is a meal choice or deciding between the wheelchair and the sofa, mother and daughter communicate through a constant series of multiple-choice questions. Yet, from the very moment Ka-ki entered this world, she was confronted with the ultimate choice of life: to live, or to die.\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-01.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eA Soul Trapped in a Spastic Body\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003e\"Ka-ki (19) has athetoid cerebral palsy. Doctors say this type is quite difficult because her mind is fully aware of everything, yet her limbs, hands, and feet simply won't obey her, and she cannot speak,\" her mother says while massaging Ka-ki’s calves on the sofa.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eLying on the sofa nearby, Ka-ki struggles to turn her head toward her mother, but her body and limbs defy her control, tensing and contorting in the opposite direction. All she can do is let out \"uh-uh\" sounds in protest. Her petite mother understands the meaning instantly and, with great effort, lifts her daughter to reposition her.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThe contracted tendons and muscles act like a straitjacket, tightly binding Ka-ki’s body. She must struggle repeatedly just to straighten her arm; at mealtimes, she has to strain to open her mouth for the spoonful of food her mother offers. Her mother must seize that fleeting moment when her mouth opens to deliver the food. It is a constant, relentless battle; finishing a single bowl of chopped noodles takes over an hour, leaving Ka-ki frail and weighing only 50-some pounds.\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cspan\u003e\u003cstrong\u003eAthetoid Cerebral Palsy (Dyskinetic Cerebral Palsy) is a movement disorder or dyskinesia caused by brain damage. Typically, patients have no control over their limbs and are unable to speak; however, their intelligence and life expectancy are no different from those of a healthy person.\u003c\/strong\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-02.jpg?v=1773883112\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-05.jpg?v=1773883112\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eNeglect in prenatal checkups\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eRecalling the year I was carrying Jiaqi, my mother said that during the last ultrasound of the prenatal checkup, the amniotic fluid was contaminated with meconium, making it hard to see clearly. The nurse, considering previous checks were normal, did not take it seriously. The butterfly flaps its wings gently, and a small oversight stirred up a storm in the lives of Jiaqi and my mother.\u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003e'It was only at natural birth that we discovered Jiaqi was wrapped around the neck by the umbilical cord four times,' the tiny body suffocated and turned purple, with brain hypoxia. My mother still remembers every word the doctor said at that time: 'The doctor asked whether to attempt resuscitation; resuscitating might lead to sequelae, possibly affecting intelligence.' 'I didn’t think too much at that moment, I just felt that it was a life and hoped she could see this world.'\u003c\/h4\u003e\n\u003ch4\u003eJiaqi struggled back to life from the brink of death, charming and lively, but even at five months old, her neck was still weak, and her whole body limp. My mother carried her everywhere seeking medical treatment, and the result was a diagnosis of severe athetoid cerebral palsy in Jiaqi.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eDoctor: Don't think back.\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\"I remember crying heavily at that time, never thinking that one decision of mine would ruin a child's life,\" the tears carried remorse and self-blame.\u0026nbsp;\u003cbr\u003e\"The doctor told me, there are many things you shouldn't dwell on; thinking back is meaningless and pointless.\"\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-03.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-04.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eThe long road\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eBecause of work, dad was constantly traveling between Hong Kong and mainland China, while mom single-handedly took care of Jiaqí, running back and forth, going to Shenzhen and Foshan for physical therapy and acupuncture, not letting go of any hope.\u003cbr\u003e\"Back then, early in the morning, I would hold her and take the bus to the hospital, spending the whole day there.\" \"The hardest times, I would hold her alone on a long-distance bus for several hours to go to Foshan for acupuncture, and then stay there for more than twenty days.\"\u003cbr\u003e\"One time was really tough, crying until I lost my voice. She had undergone acupuncture for more than half a year at the hospital, but it completely didn't help Jiaqí, so we had to go to other places hoping it could help her.\" It was the New Year, a time that should have been for family happiness, but mom held three-year-old Jiaqí standing on a strange street, with no idea what the future held.\u003cbr\u003e\"It was really hard, nobody could help you or understand you, and you couldn't see any hope. The road ahead was still so long, I didn't know what to do,\" mom sobbed, \"I don't even know how I got through it back then.\" She felt lost, desperate, but never gave up.\u003cbr\u003e\"Sometimes when taking her for physical therapy, the therapist would joke, 'She's that serious, why did you choose to save her?' But I felt that many things aren't 100% hopeless. There might be a chance for improvement, maybe she could be healthy.\"\u003cbr\u003e\"Sometimes, seeing the discomfort her body caused her...\" Originally quiet Jiaqí suddenly started crying and waving her arms and legs, and mom hurriedly comforted her, \"Because it touches the issues in her heart, she feels very distressed, so she cries.\"\u003cbr\u003e\"Sometimes, when discussing her problems with the school social worker, she would cry upon hearing it. The worker said that this is a way of expressing herself, and after crying she might feel a bit better, because she feels that someone understands her.\"\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-06.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eChoose one of the two answers\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eJiaqi can only express herself through her eyes and voice. Occasional movements like turning over or casually changing TV channels all require help from others. A mother and daughter share a deep connection; the piercing screams to outsiders are a language that only her mother can understand. With enough patience and careful guesswork, one can enter Jiaqi's inner world. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eShould she turn around or sit up? Does she want to watch TV or use the iPad? 'If I want to watch TV, I look to the left; if I want the iPad, I look to the right.' Looking at the fist her mother holds in front of her eyes, all those unspoken answers are hidden in Jiaqi’s eyes. Eyes are the windows to the soul and the bridge between Jiaqi and the world. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eIf her mother guesses correctly, Jiaqi will try to make an approving 'mm… mm' sound; if she looks at her stomach at the wrong time, her mother will guess: 'Want to go to the bathroom? Does it hurt there?' During interviews, Jiaqi watches the interactions between the Lifewire team and her mother, occasionally expressing agreement with a 'mm… mm' sound, her eyes closely following these strangers.\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eA way to express a choice between two options with a fist: 'Maybe she needs a lot of things, sometimes it's really hard to guess, and she gets very frustrated.'\u003cbr\u003e'The social worker teacher also thinks that Jiaqi may have more emotional issues.'\u003cbr\u003e'It feels like she used to be happier; all the old photos show her smiling, but in the past two years, there have been fewer smiles. As she grows older, there are more emotions.'\u003cbr\u003eHer mother gently stroked Jiaqi's hair and said with a bit of sighing.\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-07.png?v=1773883113\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eThe pain of growing up\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eEntering adolescence, Jiaqi developed more of a habit of biting her lower lip. Whenever she got nervous, she would bite it until it bled, with old injuries not healed yet new ones forming, causing her lower lip to become deformed. Her mother felt heartbroken and helpless, only able to place towels for cushioning; when they became wet and dirty, she would replace them with another one. Every day, she had to wash over 30 towels, and the ones torn from biting were countless. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eTaking care of her became increasingly difficult for her mother. \"She used to be smaller and not so tall,\" \"When she was younger, she didn’t have so many uncontrollable movements.\" In recent years, the muscles in her limbs have also become increasingly tight. \"Before, her leg muscles were not so tense, she could stand for a short while, but starting last year, she hasn’t been able to stand because her muscles became tighter and contracted, unable to straighten. She needs relaxation medication to sleep.\" \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003e\"Feeding her is the hardest part, because I have to hold her, possibly feeding her for an hour, and afterward, my whole body aches.\" In recent years, Jiaqi’s pelvis has also protruded, causing pain and increasingly crooked sitting; after surgery, although her sitting posture improved, the wound is expected to take a year to heal, so she currently relies on painkillers, and one leg has become several inches shorter.\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-08.jpg?v=1773883113\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eTaking care is enjoyment, not hardship\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eJiaqi loves to eat, especially cake sushi, and her mother is also grateful that she can eat. Enjoying the flavors and going shopping are Jiaqi's happy moments. \"When I go out with her, the other ladies see us and ask if taking care of her is very hard? Actually, it's not hard for me; it's much harder for the child.\" As she spoke, her mother's eyes gradually became moist. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eEvery morning, she takes Jiaqi to school, then buys ingredients to prepare lunch at home, delivers it to school to feed her personally, and later picks her up after school. She puts all her time into Jiaqi, running back and forth, but she says she enjoys it: \"At least the child can go to school and doesn't have to be stuck at home or in the hospital, bored.\" \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eSome friends suggested sending Jiaqi to a boarding school, but she flatly refused, preferring to handle everything personally. She also feels uneasy about hiring a maid for help and hopes to save money to buy delicious food for her daughter.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eThe only person who understands her besides her family\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eJiaqi loves Hello Kitty the most. The large Hello Kitty doll at home was a gift from the social worker and teachers who care for Jiaqi. In the photos that her mother took out, besides the pictures of her mother with a youthful and innocent face holding baby Jiaqi, and little Jiaqi lying on the bed looking at the camera playfully, there are many photos of the mother and daughter traveling with classmates and teachers. They went to Tsim Sha Tsui, to the M+ Museum, to Cheung Chau... Jiaqi in a wheelchair, along with her mother and classmates, showed radiant smiles on the ferry, feeling the freedom brought by the sea breeze.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-09.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-10.jpg?v=1773883113\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eThere is also a photo of a pink handmade little handbag. \"On Mother's Day, the teacher asked Ka Qi what she wanted to make for her mom, and she made a handbag for me, purposely choosing her favorite pink color.\" Mom couldn't hide her smile, recounting every detail, \"Sometimes when she makes cookies at school, she says she wants to save some for me. When the girls see me, they say, 'Ka Qi says she saved it for you.' She always thinks of me and wants to share with me.\" Mom melted into a smile as she spoke. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eKa Qi loves going to school. \"But a few classmates have already graduated,\" and a close male friend even calls to check on Ka Qi after leaving school, making her so happy she beams with joy. But Ka Qi also has to graduate, leaving behind not only her family but also the only people who understand her. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eMom is grateful to the school social workers, who, in response to Ka Qi's emotions and difficulties, allowed her to postpone graduation for a year while looking for ways to help her communicate. They finally found a computer operated by eye-tracking, the 'eye-control device,' which allowed Ka Qi to express her thoughts trapped inside her spastic body.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003ePush open the closed window\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHowever, the equipment is not cheap, and the monthly expenses for formula, diapers, nutritional supplements, medications, and follow-up visits left the family with no extra resources to afford them. Fortunately, with the help of a social worker, they got in touch with 'Care Network.' After understanding the situation, 'Care Network' immediately provided funding for the purchase. The teacher and social worker also tried to use the time before graduation to train Jiaqi to master its use. 'Now that she has an eye-control device, she is visibly happier.'\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-11.jpg?v=1773883113\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-12.jpg?v=1773883112\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eRegret after speaking\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDo you regret the choice you made to save your child that day? On every restless night, Jiaqi's mother asked herself this question. During the day, Jiaqi's bleeding lips and painful cries tormented a mother. After so many years, Jiaqi's mother can now frankly say she regrets—not regretting bringing Jiaqi into this world, but regretting bringing her into this world without giving her a healthy body. The only thing left is to move forward with Jiaqi, to walk out a path that belongs to the two of them.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eNo longer looking to the future\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\"About seven or eight years ago, I had a thought, that one day, maybe when I’m older or not in good health, I might not be able to take care of her, so what would happen then...\" Before the voice even fell, the tears had already come. The feeling of helplessness and despair, which once fed thoughts of suicide, made her consider leaving this world together with Jiaqi. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eBut at some point, she awakened to the fact that no matter how difficult the times are, they will pass. \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003e\"From the day she was born until now, all these years, although we’ve lost a lot, there have also been happy moments. At least I have a daughter who has been with me all these years, and I have always been there for her. We rely on each other.\" \u0026nbsp;\u003c\/h4\u003e\n\u003ch4\u003eWhat about the future? Who can know? At least for now, mother and Jiaqi love each other, support each other, and together walk from the past into the future!\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-13.jpg?v=1773883113\" alt=\"\"\u003e\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":"Ka-ki","offer_id":43243474321526,"sku":null,"price":210.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3632-00_0bb6bba7-80cd-40e9-b00d-aadaea2632a7.jpg?v=1773885595"},{"product_id":"小兒麻痺鬥士-李榮文","title":"小兒麻痺鬥士 - 李榮文","description":"\u003ch4\u003e「Reni ！（「的」起條頸）！」\u003cbr\u003e一句著他人扶起自己身軀始能理順呼吸的請求，\u003cbr\u003e也許是李榮文人生中說得最多的話。\u003c\/h4\u003e\n\u003ch4\u003e長坐輪椅，氣若游絲；年近六旬，但體重不足50磅；\u003cbr\u003e長伴他的，還有掛於臉上輸送着氧氣的「貓鬚」；\u003cbr\u003e沒有氧氣機，他連踏出家門覆診也沒機會，甚至幾近沒命；\u003cbr\u003e自小患上小兒麻痺症，全身僅頭部及幾根手指輕微活動，惟他仍樂意以自身故事燃亮他人；\u003cbr\u003e「我唔係一世都要人幫，做得到嘅，有能力嘅要去幫人！」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-01.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-02.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e59歲的榮文瘦骨嶙峋，儼如八、九歲小孩的身型，小兒麻痺症引致他肌肉萎縮，無法控制四肢，只能短暫坐在輪椅上，其餘時間均長卧病榻；缺乏自理能力的他，日常事務都依賴照顧了他15年的外傭Reni 打理，大小二便亦要以尿袋或尿套解決。\u003c\/h4\u003e\n\u003ch4\u003e初見榮文，一臉嚴肅，看來不苛言笑，自帶不容小覷的氣場；然而甫開口，便滔滔不絕跟 Lifewire 團隊分享自身經歷；疾病限制了他的身體，卻沒封閉他的心扉。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-03.jpg?v=1773888608\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-04.jpg?v=1773888608\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e母誤信謠言 錯過治療黃金期\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「BB要燒先好！快高長大！」1963年，是榮文出生之年，也是香港引入口服小兒麻痺疫苗的年份。儘管小兒麻痺症於五六十年代盛行，榮文的母親缺乏醫學常識，誤信鄰居傳言，對榮文常發高燒不以為意。「嗰時電視冇咁先進，接收資訊好慢。我細個早餐係飲煉奶，阿哥食白粥撈鹽或黃糖，我哋唔識，以為全世界小朋友都係食呢啲！」\u003c\/h4\u003e\n\u003ch4\u003e直至一次高燒持續多天，一直未有好轉，母親才帶他到醫院，最終證實患上小兒麻痺症。醫生雖為他處方口服疫苗，可惜為時已晚，榮文用藥後毫無反應：\u003cbr\u003e「遲咗啦！啲口服藥，係預防，唔係治療㗎！」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e家境清貧難治療 漸失活動能力\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e據世界衛生組織資料，約0.5%小兒麻痺症患者會終生癱瘓，而當中 5-10% 因呼吸肌失去活動功能而致死；患者需經歷漫長的治療，但出身赤貧的榮文一家無法負擔醫療開支，只能由他「自生自滅」;當其他小朋友在公園或屋邨走廊嬉戲，不良於行的榮文就只能坐在門口看着。\u003c\/h4\u003e\n\u003ch4\u003e「佢哋唔知我企唔到！」榮文憶述三、四歲時的一次意外，當時鄰居想拉他一起遊玩，「一拉成個仆落地下，頭破血流，阿媽即刻同我止血，抱我入院急救。」\u003c\/h4\u003e\n\u003ch4\u003e榮文小時候仍可以自己提碗吃飯、雙手拿羽毛球拍；九歲時住了三年醫院，出院後便無法自立行走，只能坐在地下慢慢向前挪動。十多歲時，為幫補家計，他開始幫忙母親做些工廠活，賺取一個幾毫，但遇上香港工業式微，加上身體漸差，逼於無奈失去工作，成年後仍需依靠家人養活。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-05.jpg?v=1773888608\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-06.jpg?v=1773888609\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e坐着也喘氣 購氧氣機求續命\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「你等我一陣，停機。」訪問約十分鐘，榮文突然叫停，著 Reni 為他順氣。Reni雙手托着他的脖子和下巴，像泵氣球般上下擺動數十下。榮文稱，這有助吸多點氧氣入肺部，讓呼吸暢順點。「我而家咁都扯晒氣，仲話叫我走落賽馬會（診所）。」他慨嘆醫生不明白自己的苦況：「坐屋企都要依賴氧氣機呼吸，要花三、四小時到診所覆診，萬一出現意外，後果難以想像……」\u003c\/h4\u003e\n\u003ch4\u003e回想初次致電榮文，他說要立即掛線卧床「準備」，因為他無法坐着多談數句。「冇諗過要聞氧氣，諗都冇諗過會有今日。」臉上掛着「貓鬚」的榮文，斷斷續續的每數個字慢慢吐出。其身體隨年紀漸長每況愈下：2020年中 ( quote: 舊年開始，舊年6月開始覺得唔妥，戴唔到口罩，一戴口罩扯晒氣 )，他甫戴口罩就呼吸不暢順，也不能久坐，動輒要躺在床上回氣；半年後，連進食也有困難，「唞半個鐘，起身再食過，最嚴重嗰陣（要唞）四、五次。」那時候的榮文瘦得兩邊面頰凹進去，「面青口唇白，我媽見到都驚！」\u003c\/h4\u003e\n\u003ch4\u003e「上門做嘅每月兩次物理治療，兩次職業治療，仲有護士上門……通通停晒。」疫情爆發以來，多項上門復健治療被煞停，也是榮文病情惡化的原因。「食唔到即係等死囉！」他意識到問題，於是去年三月購入氧氣機 ( quote: 嗰部氧氣機，今年3月先買 )，開始慢慢吃得下飯:「食碗粥唔使瞓喺床食，可以坐喺度食。」再次吃回蝦餃燒賣等他喜歡的食物，榮文氣色好轉，情緒也漸回復；\u003cbr\u003e惟，就算復健服務隨疫情緩和而陸續恢復，榮文身體已無復以前的狀態。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-07.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-08.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e突呼吸困難 路人助脫口罩保命\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e榮文以往會和 Reni 或母親到街市買菜，飲茶，吸一口新鮮空氣。至去年十一月，他如常在商場等待Reni，但他「突然間唞唔到氣」。危急之下，他只好硬着頭皮走進附近餅店，請求職員幫忙拉低口罩，使他能大口呼吸，然而職員斷言拒絕，只著他向保安求助。幸好另一職員及時開口:「幫佢拉啦!\u003cbr\u003e」 榮文才得以脫險。\u003c\/h4\u003e\n\u003ch4\u003e「一拉落嚟，嗰條氣即刻唞到。」憶起驚險一幕，榮文仍心有餘悸，但自此也不敢獨自外出。「我同我工人講，你買餸，我瞓喺床度等，唔跟你出去，太危險，未必次次咁好彩有人救。」那次後，榮文一直待在家裏八個月，外出生怕險象重現，但困在數十呎的家中，同樣使人感到窒息。「嗰種感受真係冇人會明㗎！」他不無唏噓。\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-09.jpg?v=1773888608\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-10.jpg?v=1773888608\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e入院檢查難作準 出院翌日即復發\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e榮文曾因呼吸困難到醫院求醫，但院防檢查肺功能時，難以模擬日常生活狀況:「你瞓喺床，根本就夠氣，吸多幾啖就93（血氧飽和度）。佢哋唔會，亦冇咁得閒幫你又坐又瞓咁check。」抽動脈血捱了三針，榮文形容「痛到嗌救命」，卻只換來一份指數正常的報告。\u003c\/h4\u003e\n\u003ch4\u003e醫生最終判斷榮文不需要呼吸機，便讓他出院。「一次一次咁樣折磨我！」他解釋，醫院時所吸的是純氧，和家中所用的氧氣機不一樣，因此在醫院會比較精神，還令他以為這次終於能「斷尾」，豈料第二天回到家中，隨即打回原形不斷喘氣。\u003c\/h4\u003e\n\u003ch4\u003e「咁我就知，呢個病冇咁易解決得到。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e覆診路遙 盼獲便攜式氧氣機\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e自從要依賴氧氣機呼吸，榮文就難以外出，但每隔八個月，榮文就要到專科門診覆診，而普通科則兩至三個月一次，每次覆診來回都至少要三小時。訪問那星期，榮文原定要覆診，也因無法外出而被逼改期。\u003c\/h4\u003e\n\u003ch4\u003e「我而家最想要就係一部便攜式嘅氧氣機。」呼吸障礙為榮文人生設限，牢牢地把他困在床上，隔絕了外面多姿多彩的世界。談到最渴望完成的事，榮文直言別無所求，只求到街上逛一逛，到公園兜一圈，又或到街市親自挑選愛吃的東西:「出到去就得，冇諗其他，我而家連門口都出唔到，咁仲可以講咩嘢呢？」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-14.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-08.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e中藥見效 難以負擔忍痛放棄\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e見榮文經常出入醫院也沒好轉，舅父便給他五千元，嘗試向中醫求診。接受中醫診療後，榮文的身體情況有改善，「啲藥好勁，飲咗有啲反應。頭嗰個月唔係好覺，第二個月開始講嘢大聲啲，同埋冇咁怕凍，個人冇咁虛，個醫生都話好啲喎。」雖再沒突破進展，但至少體質較前強壯。\u003c\/h4\u003e\n\u003ch4\u003e「五日藥，加埋診金就五嚿水，無底深潭，咁就放棄唔睇。」身體狀況有好轉，卻無法負擔藥費，亦不好意思再向親人開口。治療中斷後，他形容是前功盡廢：「完全打回原形，仲差過之前。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none; height: 842px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-12.jpg?v=1773888608\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 426px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 426px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-13.jpg?v=1773888609\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e無懼障礙 燃自身亦燃亮他人\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我唔係一世都要人幫，做得到嘅，有能力嘅要去幫人！」身懷缺陷，靠着綜援過活，卻沒磨滅一顆樂善好施的心。住在護理院時，護士主任常找他到學校演講，也參與過傷健共融的表演:「高山劇院，跳輪椅舞，壓軸加插表演，都有我份。」試過遇到身無分文的印傭姐姐，他給了100元，讓她們得以買飯盒充飢。看着她們不斷答謝，榮文仍難忘懷那份真摰的笑容。\u003c\/h4\u003e\n\u003ch4\u003e榮文希望以生命影響生命，遇上學生聊起家庭的不如意時，也會鼓勵他們:「幾唔開心都好，始終都會過去，你哋冇可能一世同阿爸阿媽住，依家可以一齊就要珍惜，機會過咗就冇了。」他盡自己所能，希望以過來人的身份讓學生們走少點冤枉路，也勉勵他們珍惜親人！\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-11.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-15.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e感激九旬母不離不棄 活在當下\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我阿媽最鍾意走過嚟，佢話同佢一齊食嘢傾偈，先係孝順仔女。」縱使榮文因小時缺乏治療而導致病情惡化，整個訪問卻沒半句怨言，反而對不離不棄照顧他的母親心存感恩。疫情期間，將近九旬的媽媽不顧其他子女反對，堅持探望榮文，兩母子落街散步。\u003c\/h4\u003e\n\u003ch4\u003e「2月27號，佢過嚟探我，29號佢就確診咗（肺炎）。有時冥冥中自有主宰，點避？」步入晚年的兩母子，不想留下遺憾，排除萬難堅持相聚，幸而媽媽最終大步檻過，「我話唔使驚咁多，想過嚟就過嚟。」\u003cbr\u003e「人哋點睇你唔緊要，自己開心就得。」榮文接受自己的與眾不同。窗外的陽光柔柔照到他身上，沒有很大的夢想，此刻的榮文只想活在當下，與年紀老邁的母親共度餘生。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-16.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-17.jpg?v=1773888609\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e採訪、撰文：計穎恩、蕭愷智、梁劍紅\u003cbr\u003e編審：梁劍紅、蕭愷智\u003cbr\u003e攝影：Sea.Pho.Yea、義工Jennifer\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e生活照由受訪者提供\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"李榮文","offer_id":43243474485366,"sku":null,"price":190.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3622-00_29a19f95-c18c-4a4f-a23b-7b49044854b3.png?v=1773889807"},{"product_id":"全港唯一罕病-抽搐無間-植物-男孩-何俊杰","title":"抽搐無間「植物」男孩 - 何俊杰","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】全港唯一罕病 抽搐無間「植物」男孩  The Miracle Boy With Seizures 24\/7 || Hong Kong \u0026amp; One \u0026amp; Only\" src=\"https:\/\/www.youtube.com\/embed\/Mj4CVMawI2c\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e龍鳳胎呱呱落地；\u003cbr\u003e媽媽心願是大手握小手，遊歷世界；\u003cbr\u003e一歲半起，這雙手，日夜也未能歇息；\u003cbr\u003e白天，大手握小嘴，送走嚨中痰；\u003cbr\u003e晚上，大手握小手，陪睡生死邊緣；\u003cbr\u003e「我帶佢嚟呢個世界......佢有生存權利......感受呢個世界！」\u003c\/h4\u003e\n\u003ch4\u003e「冇得醫！全世界400幾個，香港得佢一個，醫生都冇接觸過……」這種全港唯一，著實來得諷刺！眼前8歲的何俊杰，身體軟癱、呼吸急促、無法言語、目光呆滯、反應遲緩，坐輪椅需靠安全帶穩固身體；連綿不斷的喘鳴夾雜「咦咦哦哦」的低吟，突然「喀喀」咳嗽，媽媽急速掩着俊杰的小嘴，滿手頑痰，光速清理後急返兒子身邊，每分每秒「睇實」，惟恐他抽搐不止。這雙無法修飾的手，自兒子患上罕見病，沒有一刻能停下來。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-01.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-02.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e無法預測  歲半突高燒確診\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e回想從前，媽媽說俊杰看來與常人無異，但較龍鳳胎妹妹晞彤發展遲緩。「坐時好易跌落嚟，學行時行得唔係咁好，諗住只係慢啲，未好在意 。」一歲半時，俊杰突發高燒，留院觀察一星期準備出院之際，他突然雙眼傾斜、手腳僵硬抽搐，間歇抽搐兩小時後，被送入深切治療病房，證實他患上「琥珀酸半醛脱氫酶缺乏症」SSADH，腦部缺乏某種酵素，更引發經常性抽搐。\u003c\/h4\u003e\n\u003ch4\u003e「胚胎同BB嗰陣，基因測試都驗唔到，到一歲幾，嗰種酵素越嚟越少先發現到，酵素唔夠用，就會引發抽筋同發展遲緩。」其他症狀還包括睡眠障礙、共濟失調、癲癇發作等。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-03.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-04.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e抽筋無間植物人   媽每晚拖手陪睡\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e發病後，媽媽形容俊杰有如「植物人」，「佢以前可以行吓走吓講吓『車車』、『爸爸』等單詞，識得玩玩具，但自從醫院出嚟，成個人昏迷咗，一日抽筋幾十次，手腳唔識喐又冇反應。」有次嚴重起來，俊杰抽搐至全身僵硬，缺氧、眼往上傾斜、嘴唇變黑，全冇反應，情況長達五、六分鐘，慌得媽媽急召救護車。自此，媽媽每晚都拖着俊杰的小手陪睡，「起碼瞓著咗我都知佢抽筋。」\u003c\/h4\u003e\n\u003ch4\u003e為了控制抽筋，醫生建議俊杰接受「生酮飲食」，進食Ketocal 奶粉。媽媽最初堅持以「糊仔」用口餵食，惜俊杰因吞嚥困難常「濁親」引發肺炎，更吸收不到所需營養，五歲時體重僅得10公斤。\u003cbr\u003e「濁親落唔到去，啲酮都出得唔好，所以抽筋多咗，基本上個個月都喺醫院。」媽媽盡管心中百般不忍，也無奈接受插鼻胃管以全奶灌食。去年底，才完成手術改以胃造口灌食。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-05.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-06.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-07.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-08.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e每小時窒息80次   睡覺如遇溺被捻頸\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「每過一日都係賺返嚟，生命喺度倒數緊。」俊杰腦部萎縮嚴重、心肺功能衰竭、出現腎病等，「醫生話一般去到11、12歲，攞佢命嘅唔係呢個病，可能係其他副作用。」 還有「分分鐘攞佢命」的睡眠窒息，「瞓瞓吓見佢面色變紅再變黑，好似無呼吸。」醫生指原來俊杰每小時窒息多達80次以上，血液含氧量短時間內急跌「好似俾人捻住條頸，喺水浸親唞唔到氣，喺度掙扎，醒到就好彩,\u003cbr\u003e醒唔到就係咁去咗。」\u003c\/h4\u003e\n\u003ch4\u003e醫生一席話，令媽媽難過得「爆喊」，心頭淌血。「唔知點去接受，我晚晚陪佢瞓，都唔知原來佢喺生死邊緣掙扎緊，好痛苦，我覺得好難受。」為紓緩俊杰睡眠窒息的問題，家中已租借氧氣機隨時候命；出街一定「豬嘴」(氧氣瓶) 跟身，以防俊杰「條氣唔順」，惟一切皆是治標不治本。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-09.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-13.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e為兒賣車賣樓   透支欠債廿多萬\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e夫婦倆一直於內地從事旅遊業，以往每天工作中港兩地走；媽媽坦言，面對俊杰越趨嚴重的狀況及沉重的醫療負擔，「車都賣埋，樓又賣埋，可以賣嘅嘢都賣晒。」為了俊杰，多年來已耗盡逾四百萬積蓄。\u003c\/h4\u003e\n\u003ch4\u003e適逢新冠肺炎肆虐，夫婦倆由年初失業多時，媽媽亦因照顧俊杰而再無法工作，零收入下惟有透支信用卡，「佢要食奶粉，我哋唔食佢都要食。 」俊杰現時每天四餐，一罐300克奶粉($380) 只是六餐份量，每月奶粉開支約$8,400，「又要租樓及其他費用，每月最少要三萬蚊開支。」銀行欠債廿幾萬，一家全靠在內地當臨時工維生的爸爸獨力支撐，爸爸坦言「頂唔順」，「由得佢自然啲走，由得佢唔好咁痛苦！」夫妻間也曾為此爭拗。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u003cimg alt=\"\"\u003e\u003c\/p\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e山窮水盡，原本跟其他家長分租$13,000的租金，現也難以承擔，本打算另覓家園，「因為推輪椅，諗住租村屋地下，但都要萬一蚊，好貴。」遍遠不便，更恐耽誤俊杰入院，還要思量妹妹上學的路程……排山倒海的問題，媽媽一臉徬徨無助。採訪當天，我們買了蛋糕探訪，本想先放進雪櫃，惟發現連雪櫃也沒有，「冇法子，所以我哋食得好簡單，煮個麵同雞蛋，就一餐。」\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-10.jpg?v=1773893496\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「唔可以離開佢一分鐘」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e疫情下在內地工作的爸爸回不了家，小兄妹好幾個月沒見爸爸了，由媽媽眠乾睡濕獨力照顧兩兄妹。訪問一整天，媽媽總不停「騰出騰入」，無間斷的例行「公事」，餵奶、食藥、拉筋、站「企架」、沖涼、換尿片‧‧‧‧‧‧ 無一不「大陣仗」，光是每餐餵奶便花40分鐘，還未計事前的準備功夫；五花八門的藥丸：抽筋藥、鬆筋藥、化痰藥、瞓覺藥……；每天訓練俊杰心肺功能，站「企架」及拉筋伸展1小時，好不吃力！期間經常要為俊杰吐出濃痰、拍背、側身、跟他拍手唱歌，「唔可以離開佢一分鐘」，難怪媽媽周身酸痛勞損。\u003c\/h4\u003e\n\u003ch4\u003e幸而，妹妹晞彤會擔當「小助手」，「佢幫我做好多嘢，我煮飯時、哥哥企緊企架時，佢都幫我睇住哥哥個頭有冇危險，咳時佢識得幫哥哥側身，抽筋時會即刻嗌我。」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none; height: 2429.43px;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-11.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-12.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 798.213px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 798.213px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-14.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 799.213px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 799.213px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-15.jpg?v=1773893497\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「媽咪：你當我係哥哥攬住我」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「媽媽你唔使擔心，你休息吓，我睇住哥哥。」晞彤是家中的小天使，治癒人心。媽媽因哥哥入院常擔心得唉聲嘆氣，晞彤窩心的安慰是溫暖的添加劑。「媽咪你當我係哥哥囉，你攬住我，當我係哥哥陪住你」，她更會說故事逗媽媽開心、又經常畫畫鼓勵哥哥‧‧‧‧‧‧ 媽媽看在眼裏感動又愧疚。 「其實對佢好唔公平，自己覺得好內疚，照顧得佢唔好，但佢一句怨言都冇，仲好體諒我。」\u003c\/h4\u003e\n\u003ch4\u003e爸爸不在身邊時，晞彤是媽媽唯一的寄託。「佢真係我精神支柱，我有咩都會同佢講。」晞彤的畫作成為媽媽的「精神食糧」，「係我冇咗佢唔得，唔係佢冇咗我唔得。」\u003c\/h4\u003e\n\u003ch4\u003e適逢當日收到\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e\u003ca style=\"color: rgb(0, 170, 255);\" href=\"https:\/\/www2.lifewire.hk\/collections\/activities\/products\/%E4%BC%81%E6%A5%AD%E7%A4%BE%E6%9C%83%E8%B2%AC%E4%BB%BB-%E7%BE%A4%E5%88%A9%E9%9B%86%E5%9C%98%E6%8E%A2%E8%A8%AA%E7%97%85%E7%AB%A5%E5%AE%B6%E5%BA%AD-%E6%89%80%E6%9C%89%E4%BA%BA%E5%81%9A%E5%98%A2%E6%9C%89%E5%BF%83%E5%95%B2-%E5%85%AC%E5%8F%B8%E4%B8%80%E5%AE%9A%E9%80%B2%E6%AD%A5?_pos=6\u0026amp;_fid=f45d546c9\u0026amp;_ss=c\"\u003e群利集團\u003c\/a\u003e\u003c\/span\u003e義工探訪贈送的筆記本，正好大派用場。晞彤握緊筆記本，「有時哥哥做手術你唔得閒，婆婆嚟照顧我，我就寫喺簿仔度，等你返嚟睇我想講咩畀你聽，好嗎？」「好呀！有咩說同媽咪講可以寫喺呢本簿仔，唔好放在心入面。」語畢，母女相擁入懷緊緊依偎，彷彿填補了一切的缺失。\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e親愛的哥哥：\u003c\/h4\u003e\n\u003ch4\u003e我知道您很痛苦，但是你一定要堅持下去，一定不可以離開我們。\u003cbr\u003e如果你離開我的身邊，我會很傷心，很傷心的，我以後好好照顧你。\u003c\/h4\u003e\n\u003ch4\u003e媽媽不開心的事\u003c\/h4\u003e\n\u003ch4\u003e哥哥不在身邊，媽媽一個人很不開心，爸爸在外地，這4個月我們也看不見爸爸，媽媽很想哥哥回家一起玩。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-16.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-17.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e兒子「對不起！」 你一定要走得更遠\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「嗰時晚晚喊，日日喊，好無助。」爸媽曾尋遍國內醫院及醫生，「佢哋都唔知呢個係咩病，聽都未聽過。」她坦言精神崩潰至極，曾對俊杰「發脾氣」，「佢以前未食瞓覺藥瞓唔到覺，晚晚喊天光，我就攬住佢嚟氹，喊到我個人好煩，會掉埋佢一邊鬧佢，鬧完又攬住佢喊，同佢講對唔住，阿媽唔好。」「我有時會怨恨佢，點解你害到我而家咁，但諗返轉頭，其實係我害咗佢，我帶咗呢種病畀佢。」\u003c\/h4\u003e\n\u003ch4\u003e藉向教會朋友傾訴，媽媽累積的情緒終找到出口，慢慢地接受俊杰每況愈下的現實，「佢而家嘅狀態，都知唔係醫生做 (醫) 得到嘅事，我就接受咗。」雖然後來發現美國有SSADH 協會，本想攜俊杰前往醫治，奈何費用龐大，需要醫生及護士全程跟隨，「唔係我諗得咁簡單。」不過，媽媽也透過醫生與協會聯繫參與研究，「唔係試藥，係研究喺胚胎時可發現呢個病，唔好好似我哋咁，出咗世先知，真係一件好痛苦嘅事。」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-18.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-19.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e生命無闊度  只盼延長兒命\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e苦候兩年，在社工協助下申請到基金購買矯形輪椅，防止俊杰脊柱側彎的情況惡化。時日漸長，媽媽惟恐某天抱不起俊杰，希望為他度身訂造浴椅、吊機，方便移動；也希望為他添置新「企架」，因現時使用的「企架」都是臨時嵌製，使用上不夠方便及安全，「而家連自己食飯都食唔起嘅時候，點樣去負擔呢啲醫療開支？」\u003c\/h4\u003e\n\u003ch4\u003e曾經，媽媽心願是一家人到國外旅行，「我好想佢去感受吓呢個世界」。\u003cbr\u003e此刻，媽媽只懷抱信念望著俊杰，「生命係冇闊度，我會盡量令到佢嘅壽命長啲。」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-20.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-21.jpg?v=1773893496\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n            .adaptive-table {\n            color: black;\n            border-collapse: transparent;\n            width: auto;\n            margin: 0 auto;\n\t    white-space: nowrap;\n        }\n        .adaptive-table th, .adaptive-table td {\n            border: 1px solid white;\n            padding: 8px 12px; \n            text-align: center;\n            height: auto;\n        }\n    \u003c\/style\u003e\n\u003ctable style=\"width: 104.26%;\" class=\"adaptive-table\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e租氧氣機\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$330\/月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $30 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e尿片\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$810\/月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $68 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e造口喉一條(可用半年)\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$1450\/半年\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $120 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e租呼吸機\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$1800\/月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $150 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003eKetocal 奶粉\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$8,400\/月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $700 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e浴椅\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$18,000\/張\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $1500 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e電動企架\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e$40,000\/張\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\n\u003ch4\u003e或每月捐款 $3333 X 12月\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 28.9226%;\"\u003e\n\u003ch4\u003e電動移位機\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 11.9722%;\"\u003e\n\u003ch4\u003e幾萬至十幾萬，視乎患者需要\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"width: 58.5267%;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病 | 琥珀酸半醛脱氫酶缺乏症 (SSADH)\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e一種罕見的染色體隱性遺傳病，引發多種神經問題。常見症狀如發育遲緩、語言及智力殘疾、出生後不久會肌張力下降，逾半患者有癲癇、共濟失調#、反射減弱，並有睡眠障礙、多動，缺乏專注力和焦慮，也有控制眼球移動的問題，不尋常症狀還包括肢體不受控，不自主肌肉緊張 (肌張力障礙) 肌肉抽搐和漸進性加重等。 #共濟失調Ataxias：共濟失調是由神經系統各部位的很多病因引起的。當控制運動的神經系統受損，通常會發生共濟失調，手臂和腿部肌肉無法控制，導致缺乏平衡和協調能力。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\n\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e資料來源：\u003ca href=\"https:\/\/bit.ly\/2GXYkpM\"\u003ehttps:\/\/bit.ly\/2GXYkpM\u003c\/a\u003e\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e                  \u003ca href=\"https:\/\/bit.ly\/3lBUCRN\"\u003ehttps:\/\/bit.ly\/3lBUCRN\u003c\/a\u003e\u003c\/span\u003e\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e採訪、撰文：李楚瑩、梁劍紅\u003c\/h4\u003e\n\u003ch4\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e鳴謝：\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e\u003ca href=\"https:\/\/www2.lifewire.hk\/collections\/activities\/products\/%E4%BC%81%E6%A5%AD%E7%A4%BE%E6%9C%83%E8%B2%AC%E4%BB%BB-%E7%BE%A4%E5%88%A9%E9%9B%86%E5%9C%98%E6%8E%A2%E8%A8%AA%E7%97%85%E7%AB%A5%E5%AE%B6%E5%BA%AD-%E6%89%80%E6%9C%89%E4%BA%BA%E5%81%9A%E5%98%A2%E6%9C%89%E5%BF%83%E5%95%B2-%E5%85%AC%E5%8F%B8%E4%B8%80%E5%AE%9A%E9%80%B2%E6%AD%A5?_pos=6\u0026amp;_fid=f45d546c9\u0026amp;_ss=c\"\u003e群利集團有限公司\u003c\/a\u003e\u003ca href=\"https:\/\/www.lifewire.hk\/tc\/Whats-New\/Activities\/Csrkwanlee2020.html\"\u003e\u003c\/a\u003e\u003c\/span\u003e善心探訪\u003c\/h4\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan\u003e2021年6月更新\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3 class=\"table-col half-col\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e重啟快樂人生\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_4303f2fa-5b2a-40c8-90d3-53e10531ee85.jpg?v=1780456510\"\u003e\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e何媽媽指，俊杰在這一年的身體狀況有所進步，「大個仔咗好多，開心咗。」\u003c\/h4\u003e\n\u003ch4\u003e雖然俊杰要長坐輪椅，但也無阻一家人去遊山玩水。\u003c\/h4\u003e\n\u003ch4\u003e去公園、游樂場和游泳等不同的戶外活動，都令俊杰感受到多姿多彩的世界，重現久違的笑容。\u003cbr\u003e大家請到\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e\u003ca href=\"https:\/\/www.facebook.com\/lifewirehk\/posts\/1682866411899592?__cft__[0]=AZUP6e7jBA3enveD2mLZCyMbWaCEylnaVxiKTUDQrQ4UBBGNtrM-R7Vf4DxSnNJJxvnh4yeEomsH4_OTQ1nf4TBj6rpaUmW-iUTRzKxKuqOPnrZ-4VAdcA8Qn5BdaYcRFJS3iGvth7lBICBl1A_6SKf5ki9kd0xAQ9nJdz8_ErZGd6HYiUhBxM3N30F-QrBUyvY\u0026amp;__tn__=%2CO%2CP-R\" style=\"color: rgb(0, 170, 255);\"\u003eFacebook\u003c\/a\u003e\u003c\/span\u003e留言祝福俊杰可以繼續健康成長。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_71699367-a9c5-4931-9725-7ab983d03d46.jpg?v=1780456510\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_100d75d3-18b2-43d4-99c4-4f3aebf34df7.jpg?v=1780456510\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cp\u003e\u003cspan\u003e2021年3月更新\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e成功籌獲醫療設備\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_37cefaef-4036-42c4-9a18-7fa2cf676178.jpg?v=1780456510\"\u003e\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003ch4\u003e俊杰  Fighting！\u003cbr\u003e因著大家善心捐助，患有「琥珀酸半醛脱氫酶缺乏症」SSADH 的何俊杰，已獲部份醫療設備及配件，如氧氣機、吊機、浴椅、喉管、物理治療、奶粉、營養補給品等，還有於美國訂製的電動企架，將稍後運送到港。\u003c\/h4\u003e\n\u003ch4\u003e俊杰媽媽及妹妹感恩有心人的支持，雖無法根治，惟抽筋問題暫時控制算不錯；因生酮飲食而影響的腎則一直觀察檢查；整體算有所進步，亦能暫時脫離醫院的枷鎖，回歸校園生活。\u003c\/h4\u003e\n\u003ch4\u003e請大家繼續\u003ca href=\"https:\/\/lifewirehk.typeform.com\/to\/dqq6Aw?typeform-source=www2.lifewire.hk\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e每月捐款\u003c\/span\u003e\u003c\/a\u003e支持俊杰，使他能健康地茁壯成長。\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_d6f9e6c0-057d-4ac7-b1c7-b5fd5cb39f00.jpg?v=1780456510\" alt=\"\"\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"何俊杰","offer_id":43243475402870,"sku":null,"price":180.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3616-00.jpg?v=1773901711"},{"product_id":"肌萎小勇士-陳梓鍵","title":"muscular dystrophy little warrior - Chan Tze Kin","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】杜興氏肌肉營養不良症 肌萎小勇士 輪椅無阻我世界\" src=\"https:\/\/www.youtube.com\/embed\/zcV1w0o_Hgc\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eAccompanying childhood were slides, chocolates, running wildly around beaches and courts.\u003cbr\u003eAccompanying him are Chinese medicine, acupuncture, and a wheelchair that has been with him for a long time.\u003cbr\u003e“It’s so sad,” “It’s painful,” “But for the sake of an illness, you have to persevere and continue to persevere!”\u003cbr\u003eA child with Duchenne's muscular dystrophy, gritted his teeth and spit out from his heart, it was hard to hear.\u003c\/h4\u003e\n\u003ch4\u003e\"To cure the illness, we must persist, we must continue to persist and we will be able to feel better!” \u0026nbsp;The first ten years of life should have been the joyous years of many children. \u0026nbsp;But as far as for Tze Kin, a rare disease that can't be cured has made him suffer a lot.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“My name is Chan Tze Kin. \u0026nbsp;I am nine years old. \u0026nbsp;I have Duchenne’s muscular dystrophy, which is called DMD.” \u0026nbsp;Tze Kin in his wheelchair silently told us his condition.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eThe newborn Tze Kin was no different from other ordinary children.\u0026nbsp; He was also cute and smart. \u0026nbsp;Unexpectedly, a diarrhea and a diagnosis report at the age of six months caused the family to fall into the abyss of despair. \u0026nbsp;“It was found that his liver enzymes were much higher than normal. \u0026nbsp;Once mistakenly thought of hepatitis.” \u0026nbsp;Wandering around Hepatology, Laboratory, and Neurology departments, no one could not find the cause.\u0026nbsp; Because of his young age, he could not have the needle penetration into the muscle to check. \u0026nbsp;Could not have the DNA test locally. \u0026nbsp;After here and there, he eventually returned to Hong Kong and went to the Accident and Emergency Department for re-examination again. \u0026nbsp;At his age of one and a half years old, he was diagnosed with Duchenne’s muscular dystrophy. \u0026nbsp;“Hold Tze Kin tightly at home and cried for a long time. \u0026nbsp;Then I told myself, and I need to cherish the time I have with him.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-01.jpg?v=1773906531\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-02.jpg?v=1773906533\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eDegradation and shrinkage - Average life expectancy is 18 years\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe incidence of this rare disease is one in five thousand. \u0026nbsp;There is no way to cure this disease. \u0026nbsp;Muscles will gradually atrophy and necrosis.\u0026nbsp; This will not only affect the patient’s mobility but also affects the cardiopulmonary function. \u0026nbsp;Under a worst situation, the patient needs to depend on the ventilator. \u0026nbsp;“Doctor told us that when Tze Kin is at the fifth or sixth grade of elementary school may not be able to walk. \u0026nbsp;The average age of the children who suffer this disease could only make it to 18 years old. \u0026nbsp;I just can’t accept it!” \u0026nbsp;The reporter still remembered that when he met Tze Kin last year, he was still able to walk. \u0026nbsp;Less than a year later, he has degraded to the point of fully relying on wheelchairs to commute. \u0026nbsp;When he got on the wheelchair at the main door, Tze Kin's hands were not strong enough to support him, so he could only stretch out his hands to ask his mother to hold him up. \u0026nbsp;“It's more difficult to take care of him now since he couldn’t walk. \u0026nbsp;We felt it was really difficult simply to take a step or two.\u0026nbsp; Sometimes it took more than ten or twenty minutes to walk just for a step or two.” \u0026nbsp;Before, he could still manage to go to the park to play slides or go to his favorite beach but now cannot. \u0026nbsp;Because of the lack of facilities for the disabled in many places, it’s like a big battle whenever they go out.”\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-03.jpg?v=1773906533\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-04.jpg?v=1773906534\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003ePouring water is not strong enough - to crawl into the house\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eMy hands are weak.\u0026nbsp; I cannot even hold a soda. \u0026nbsp;Not to mention on the management of a simple daily life. \u0026nbsp;“When I want to pour water, I can't even hold a pot of water.” \u0026nbsp;My legs are weak. \u0026nbsp;Once I sit down, I can't stand up by myself again. \u0026nbsp;“Going back home sitting on one side of the sofa, if I want to go over the other side of the sofa, I need to crawl and climb it up...”.\u0026nbsp; “Taking care of Tze Kin is a challenge!” \u0026nbsp;Daily life is overwhelming for his mother. \u0026nbsp;“The place where we live is not designed for the disabled.\u0026nbsp; Shower or the kitchen is not designed for him although he may want to cook and we need to help him to do everything.” \u0026nbsp;Watching children grow up is the greatest hope for all parents. \u0026nbsp;But growing together with Tze Kin, his mother is worring. \u0026nbsp;“I was sweating profusely after holding him each time. \u0026nbsp;It’s just so hard. \u0026nbsp;I took a big breath of relief. \u0026nbsp;How long could I stand with my limited energy and willpower?\u0026nbsp; How could he be degrading? \u0026nbsp;We can’t grasp it.\u0026nbsp; We even don't know whether he could bear the change of the degrading?”\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eTraveling to seek medical treatment - overcoming pain with persistence\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch4 class=\"table-col half-col\"\u003eEven though doctor said that there are no medicines to cure his disease at this moment, they still seize every opportunity to have the treatment. \u0026nbsp;Cycling, electric wheelchairs, hydrotherapy, and seeing all these could not significantly help Tze Kin to improve his condition. \u0026nbsp;In the absence of countermeasures, even if we know taking steroids will affect his blood pressure, increase his blood sugar, and it will increase appetite and cause obesity... and many other side effects, we just try to make him recover with a little more energy. \u0026nbsp;No matter whether we need to travel frequently between China and Hong Kong to receive different Chinese treatments. \u0026nbsp;Having acupuncture and moxibustion is very painful.\u0026nbsp; Taking Chinese medicine is bitterness. \u0026nbsp;This young man holds on tight with his determined heart and clenched his teeth to keep on going. \u0026nbsp;“In order to cure this disease, I must persist. \u0026nbsp;I must persist to make the change and feel better.”\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-05.jpg?v=1773906529\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-12.jpg?v=1773906529\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3 class=\"jresptbl half2col\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eBeing spoiled and not indulging - life education through disease\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4 class=\"jresptbl half2col\"\u003eHis road to maturity is more circuitous than others. \u0026nbsp;His mother did not spoil Tze Kin. \u0026nbsp;In his daily life, some seemingly simple self-care matter is also a challenge to Tze Kin. \u0026nbsp;Sometimes he chose to give up and just rely on his mother. \u0026nbsp;But his mother knows that she cannot let her son develop a habit of dependence. \u0026nbsp;She will first motivate him by saying “you can do it!” \u0026nbsp;Motivate him to first try and see if he could self resolve the matter.\u0026nbsp; If it doesn't work, she will use other ways to guide him. \u0026nbsp;Sometimes he can’t stand up. \u0026nbsp;Tze Kin will inevitably get discouraged. \u0026nbsp;At this moment, he seems always hears “Try a little stronger, give a little more energy!” \u0026nbsp;Maybe it is because of his parents’ teaching that makes Tze Kin slighly stronger than those ordinary children. \u0026nbsp;It is both painful and bitter process but he can make it through each time. \u0026nbsp;This rare disease makes Tze Kin different from his peers. \u0026nbsp;But his mother uses this opportunity to teach him equality. \u0026nbsp;Some unintentional actions among companions may affect his little mind. \u0026nbsp;As simple as playing with the kindergarten classmates, because others are running fast and not waiting for him that will make him feel unhappy. \u0026nbsp;“Although you can’t run faster than others, you are just like the other children, they don’t need to make any comity because you can’t walk.” \u0026nbsp;It seems like a lesson to my son but it is more an affirmation to him. \u0026nbsp;He, is exactly the same as other children where there are no differences. I will tell him that everyone is equal. \u0026nbsp;His thought should not think that because he is a disabled, other people should provide or give me more opportunities than others.\u0026nbsp; In fact, everyone is fair!”\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-06.jpg?v=1773906533\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-07.jpg?v=1773906533\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3 class=\"jresptbl half2col\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eSensible and filial - still comforted in suffering\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4 class=\"jresptbl half2col\"\u003eDuring the interview, the editor was able to deeply feel his mother's praise of Tze Kin as Tze Kin really knows well how to care of others. \u0026nbsp;When preparing for meal, Tze Kin did not “bury his hands and wait for the meal”. \u0026nbsp;He took the initiative to distribute tableware, pour water for everyone, etc., and did not take it for granted that others should take care of him because of his illness. \u0026nbsp;But there is nothing that touches his mother’s heart most about his son was when she once was sick. \u0026nbsp;“I was most impressed once when I was so uncomfortable. \u0026nbsp;When I returned home, I noticed I have fever. \u0026nbsp;At that time, he was still a little boy.\u0026nbsp; But he still twisted a towel to put it on me.\u0026nbsp; When I rested in my room, he mopped the floor. \u0026nbsp;I was still so uncomfortable when I woke up late at night. \u0026nbsp;I was thinking: Why he did not go to bed even late at night.\u0026nbsp; I was still thinking and want to question him.\u0026nbsp; When I went to the living room and saw that he mopped the floor although all over was water. \u0026nbsp;Talking about this sweet memory, a sweet smile appeared on his mother’s face. \u0026nbsp;\"I was so happy. \u0026nbsp;Tze Kin was so little but know well how to take care of myself and helped with the housework. \u0026nbsp;Sometimes, he saw me doing all the housework, it’s tough.\u0026nbsp; He will hold me tight and kiss me, and said “Mommy, thank you for your hard work”. \u0026nbsp;Sometimes, I cook and he will say “Thank you, Mommy, thank you for your hard work in taking care of me, cooking for me.” \u0026nbsp;The personal understanding and heartfelt words became the motivation for the family to step through the gloom.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-08.png?v=1773906535\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-09.jpg?v=1773906534\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3 class=\"jresptbl half2col\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eLearn to enjoy life - overcome difficulties and seek ideals\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4 class=\"jresptbl half2col\"\u003eWhile many parents are helping their children to grow and learn, Tze Kin’s mother’s only wish seems very simple. \u0026nbsp;“I don't want him to have all the A’s for their study. \u0026nbsp;I only hope that he can learn to face his disease bravely, learn to be optimistic, so that he could be able to do what he wants to do and help others in need.”\u003c\/h4\u003e\n\u003ch4 class=\"jresptbl half2col\"\u003e\u003cspan\u003ePerhaps because of his illness, his mother cherishes more to let her beloved son enjoy the beautiful youthful time. \u0026nbsp;Not having too much demand on Tze Kin's academics, but on the contrary, she hope that she can get a driver’s license as soon as possible, so that it is more convenient for her to take Tze Kin to go everywhere. \u0026nbsp;In addition, she could help her loved son to cultivate a lot of interests. \u0026nbsp;Cooking, table tennis, and building lego, etc. can make him play for the whole afternoon. \u0026nbsp;You may not even see that he is a “dancing master”. \u0026nbsp;Although he can’t swing his whole body with the music, he still loves to have wheelchair dance. \u0026nbsp;Maybe there are no colorful spot lights during the performance, or maybe there is no gorgeous stage, but, he really enjoyed the moment of wheelchair dancing. \u0026nbsp;“The stage can express my feeling and people know how I feel.” \u0026nbsp;He devoted himself to the music and made him dance more passionately than the dancers, not inferior to them. \u0026nbsp;He is cheerful and talkative and even said he wants to be a \"Youtuber\" and share his daily life with netizens!\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eBut what makes Tze Kin most proud of is that he is no different from others. \u0026nbsp;“I am in a wheelchair but I do a lot!” \u0026nbsp;The disease did not wear his will and he learned to cherish his time and dare to challenge, to make my dream come ture. \u0026nbsp;And my mother also hopes to spread Tze Kin’s life and drivers to more people through his life education.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-10.jpg?v=1773906532\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-11.jpg?v=1773906533\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eThe youngest son is ignorant and does not know why his mother would cry in tears. \u0026nbsp;But, by embracing each other, they still bring warmth and support to each other. \u0026nbsp;He has gone through many hardships at his young age. \u0026nbsp;When he was in kindergarten, he was once rated as autistic by the assessment center because of speaking less. \u0026nbsp;“At that time, doctor told us that it is not a big deal because of autistic as it is very common.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eIn front of the camera, Tze Kin is very talkative. \u0026nbsp;It is hard to believe that he was repelled by others for speaking less when he was young, and this prevented him from attending a full-time kindergarten. \u0026nbsp;Fortunately, after transferring to a new kindergarten, he met with very good teachers and principal who provided a lot of help and training. \u0026nbsp;After entering elementary school, he became more cheerful and willing to talk to strangers. \u0026nbsp;After re-examination, he was not autistic.\u0026nbsp; This made his mother a sigh of relief. \u0026nbsp;Yet as Tze Kin grew up, the burden on his mother’s shoulders became heavier.\u003cbr\u003e\u0026nbsp;\u003cbr\u003eIt is hard to go through the process.\u0026nbsp; But, as a mother, she will never give up. \u0026nbsp;When it is the difficult time that she can’t handle it, she will find the fellow patients group\/trusted friends to talk and share.\u0026nbsp; Social worker will help us as well.\u0026nbsp; That’s how the family go through these years.\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-13.jpg?v=1773906532\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n        \/* 通用文字容器样式（基础布局） *\/\n        .text-box {\n            width: 400px;       \/* 容器宽度 *\/\n            padding: 16px 20px; \/* 内边距，让文字不贴边，更舒服 *\/\n            margin: 10px 0;     \/* 外边距，分隔不同示例 *\/\n            color: #ffffff;     \/* 文字白色 *\/\n            border-radius: 6px; \/* 圆角，视觉更柔和（可选） *\/\n            font-size: 14px;    \/* 文字大小，适配阅读 *\/\n            background-color: #E6275A;\n          width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eUnderstanding rare diseases: What is Duchenne muscular dystrophy?\u003c\/span\u003e\u003c\/h3\u003e\n\u003cp\u003ePatients have weak limbs due to muscle disease and their calf muscles are usually abnormally enlarged (Pseudohypertrophy). \u0026nbsp;If we lightly press these muscles with our hands, we will find that the muscle has a different texture. \u0026nbsp;Since the normal tissues of these muscles are replaced by hardened tissues, the calf muscles feel firm when they are touched.\u003c\/p\u003e\n\u003cp\u003eWith age change, the patient’s muscle lesions and atrophy become more and more serious. \u0026nbsp;By the age of 12-13, patients need to rely on wheelchairs to move around. \u0026nbsp;At the same time, due to abnormal muscle mobility, many joints also have varying degrees of deformity changes, which causes inconvenience to the care of patients and also affects the cardiopulmonary function of patients to a certain extent. \u0026nbsp;The patient’s heart muscle will also be changed due to the disease, leading to cardiomyopathy. \u0026nbsp;In severe cases, arrhythmia, heart failure and other diseases may occur.\u003c\/p\u003e\n\u003c\/div\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e2021年6月更新\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_4d86588a-7040-4bff-b52b-70735d8b6141.jpg?v=1780470169\"\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e夢想成真　成為YouTuber\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e奮力追夢的梓鍵一直努力學習剪片，不停成長。早前他在\u003ca href=\"https:\/\/www.facebook.com\/permalink.php?story_fbid=914598232460431\u0026amp;id=330606317526295\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003eFacebook\u003c\/span\u003e\u003c\/a\u003e號召大家支持他的\u003ca href=\"https:\/\/www.youtube.com\/channel\/UCQZPSt9_7rbbamjWuWvuZyA\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003eYouTube頻道「蝸牛仔梓鍵」\u003c\/span\u003e\u003c\/a\u003e，希望在5月21日前可以累積4000小時的觀看紀錄，成為真正的YouTuber 。「我希望可以達到目標，然後將收入以本人名義將所得款項捐贈給一些慈善機構，雖然款項可能很少，但也想出一蝸牛力，請大家為我加油。」\u003c\/h4\u003e\n\u003ch4\u003e梓鍵以有限生命活出無限意義，「不是為了有收入，希望證明自己也能為其他人或家庭出一分力。」現時他的YouTube頻道已經建立一周年，訂閱人數已經超過15,000人，並衝破了4,000小時的大關，令梓鍵夢想成真。希望大家可以多多支持梓鍵，繼續為他打氣。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_44fcfb85-98d3-41aa-a809-852434397881.png?v=1780470186\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_b28ba597-1210-4263-8a2b-e86ee06bec2e.jpg?v=1780470187\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e2021年5月更新\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e梓鍵捐獎學金予Lifewire\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e勤奮的梓鍵又再次得到獎學金，而且主動捐出200元予Lifewire幫助其他罕病童。\u003cbr\u003e即使患上杜興氏肌肉營養不良症，身體機能一天比一天差，但梓鍵永遠積極面對，不斷追夢。\u003cbr\u003e梓鍵發掘不同興趣，做YouTuber、玩滑場傘和做義工等等，令自己發光發亮，他一直身體力行去回饋社會，努力以生命影響生命。\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_6a5741e9-7257-4aac-a768-eaf9b965357e.jpg?v=1780470353\" alt=\"\"\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Tze Kin","offer_id":43243475894390,"sku":null,"price":410.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3604-00-1.jpg?v=1774250494"},{"product_id":"脊髓肌萎少女-周佩珊","title":"A young girl with spinal muscular atrophy - Josy Chow","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】脊髓肌萎少女 奮力救病友 生存多一日 就係禮物\" src=\"https:\/\/www.youtube.com\/embed\/MASDUxWnJE8\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eAdmitted to the hospital when she was only 11 months old, her daily routine became an endless cycle of emergency resuscitation and intubation. When doctors wanted to give up on treatment, she proved them wrong with her thirst for life, willingly trying new drugs in order to be able to sit up.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThis is the story of a resilient warrior suffering from Spinal Muscular Atrophy.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eThis is Josy Chow’s story.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“Every day I’m alive is a gift.” A big girl with big dreams, Josy actively fought for her fellow patients’ rights and interests, personally writing and delivering a 100-page appeal to the Chief Executive of Hong Kong. After 17 long years, Josy was finally discharged from the hospital and was admitted to the University of Hong Kong where she aspires to write about a world of social inclusion.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eStanding on the edge of life and death, she continues to grasp onto life with the strength of her remaining two fingers.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“Hi, I’m Josy Chow. I’m currently studying English Studies at the University of Hong Kong.” Stepping into Josy’s home for the first time, I (the editor) saw a girl in a wheelchair. Wearing a hot pink t-shirt as bright as her dreams, throughout the interview I came to see a girl with stubborn determination and zest for life.\u0026nbsp;\u003cbr\u003e\u003cbr\u003eLittle Josy was diagnosed with a rare disease when she was less than a year old. “When babies get tickled or teased, most babies like to grab onto a person’s finger, but she had no reaction at all.” During a visit to the doctors to get vaccinated, the doctor saw Josy’s mom supporting little Josy’s head with her palm. Her head would slowly slump whenever her mom let go. “The doctor said something was off.” After countless tests and muscle biopsies, Josy was diagnosed with spinal muscular atrophy.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-01.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-02.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eOn the brink of life and death, a harrowing 3 minute standstill\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I had just arrived at the hospital when the doctor said, ‘Your daughter received emergency CPR for 3 minutes. Luckily, her heart is beating now.’ Hearing that, my mind suddenly went blank.” Josy’s heart has stopped at least 3 times, once stopping for 3 minutes when she was 2 years old. When her condition was most severe, Josy’s mom was unable to work, there needed to be someone looking after Josy at all times. “I was in the hospital all day, watching the index rise on the monitor. If the alarm rang, I had to run and get the nurse immediately for first aid. I was like a robot guarding the life support monitor, I lost count of how many times a day I repeated this.” Over time, Josy’s mom eventually came to learn how to perform sputum suctioning and basic first aid, becoming Josy’s exclusive ‘robot’.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eRecounting the painful past, Josy’s mom divulges, “Whenever she had a fever or a cold, she would be unable to breathe. Her whole body would turn blue, as if she were a corpse. When Josy was 8 months old, her condition worsened. During her first few years in the hospital, she had to receive emergency rescue and intubation multiple times daily.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-04.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-05.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\"I want to see Mommy, I want my lollipop!”\u003c\/span\u003e\u003c\/h3\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch4\u003e“I feel so helpless, waiting for death to come knocking. If I wanted to die, it would be so easy to just climb up and jump.” Witnessing her daughter receive emergency treatment and undergo general anaesthesia daily, Josy’s mom confessed, “Seeing my daughter in so much pain, maybe it would be easier to just end things.” Every time the rescue mission was successful, Josy’s mom would half-heartedly complain that the doctors were rushing to get off work. Mid-sentence, Mom’s eyes started to tear up, even easygoing Josy who was laughing from the sidelines fell silent.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eA sudden hush, silently conveying a heart’s weary memories. “It’s painful, I rarely bring it up.” The doctor once asked Josy’s mom if she was willing to sign the DNR (Do Not Resuscitate) order. She told the doctor, “You should ask Josy, she’s already 3 years old.” The doctor asked, “Josy, what if you could go to a place where there’s no pain, where you’d never have to hurt again? Would you like that?” “No! I want to see mom, I want to have my lollipop!” Josy exclaimed. Like a movie sequence, the doctor astoundedly took two steps back. The answer affirmed little Josy’s will to live. The next day, the doctor even bought a lollipop toy to fulfill her wish.\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-06.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-07.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eSleeping on hospital chairs, Mom has no regrets\u0026nbsp;\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eSleeping on hospital chairs, Mom has no regrets\u003cbr\u003eEver since, Josy’s mother has devoted all her time and energy to taking care of her daughter. She runs around frantically to ensure Josy’s maximum comfort, sleeping on chairs at the hospital to stay by Josy’s side. Despite all the sacrifices, Josy’s mom has never once complained. “I can only do my best to help her as much as possible, she herself wants to live.” Whatever it is that her daughter wants to do, Mom unwaveringly offers her full support.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eSince receiving treatment, Josy’s condition has largely stabilized. The range of motion in her palms has increased; she’s been able to reduce her usage of the ventilator. After 17 long years, Josy was finally discharged from the hospital! Mom had to take on multiple roles alone, leaving her job to take care of Josy around the clock. “I’m both the nurse, physiotherapist, and doctor. People think I have nothing to do, but in reality, there isn’t a single moment to rest.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWithout professional hospital equipment, sputum suctioning became a big concern. “Regular sputum suctioning units catch on fire after being on for half an hour. There was once our curtains caught on fire.” The family were forced to cave in and purchase a more advanced model. “This model can run continuously for 2 hours, allowing me to get a bit of sleep. When I wake up, I turn off the machine to let it cool before restarting it and going back to bed for 2 hours. With this method, at least I don’t have to stay up all night.” Sputum suctioning is an indispensable part of Josy’s life. Unable to swallow when lying down, Josy needs to have her sputum suctioned a few times per hour. If her condition worsens, she requires more frequent suctioning to prevent her from choking and suffocating.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-03.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-09.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSupermom designs her own \"drink alarm\"\u003c\/span\u003e\u003c\/h3\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch4\u003eTo ensure she wakes up to reboot the sputum suction machine, Josy’ mom devised a special technique, “drink and pee”. She drinks a large glass of water before bed, forcing herself to wake up every 2 hours. She switches off the machine, uses the bathroom, restarts the machine, and drinks another glass of water before going back to bed. This happens 3-4 times every night. Despite the eye bags and constant bloating, Josy’s mom willingly does so without hesitation.\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch4\u003eHave you ever blamed your mother? “No! Never! She’s already shed a lot of tears for me, emptying her savings to allow me to see the doctor. I’m grateful for my mom every day, that’s why I’m always happy.” Josy’s mom chimes in, “Seeing life flash before our eyes, I treasure every day she’s alive. To both of us, every day is a gift.” Josy’s mom doesn’t treat her daughter as a rare disease patient, doing her best to allow Josy to live out the teenage dream. Josy’s hobbies include playing video games, binging on dramas, and daydreaming about celebrities. “Although I’m studying literature, I’m pretty shallow. I usually fangirl over cute guys ...even talking about them is making my phlegm come up. With different tastes in shows, mother and daughter often fight over the TV, showcasing a different type of affection.\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-08.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-10.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eMother and daughter, bickering with love\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“Look at your face, it’s full of acne.” “Look at your big bum first!” Their tit for tat bickering is an indispensable part of their daily routine. With every affectionate clapback, the two showcase their incredible chemistry. With just one word, “Mom!” Josy's mom comes running to insert the sputum suction nozzle into Josy’s mouth. With another “Mom!” her mom automatically combs back Josy’s hair and fixes her clothes. “She’s my other half. If I get married later, he must first accept that I’ve been married once, because I’m already married to my mom.”\u003cbr\u003e\u003cbr\u003eDespite discussing heavy topics like life and death, the mother-daughter duo remain ever in sync, facing the unknown with a dose of humor. “She said she wants her favourite boy band songs played at her memorial service. Josy confesses, “I’m not afraid of dying, but I’m scared of a long and painful death. If I leave, I want it to be happy and painless. I also think about how sad Mom will be, who is she going to argue with?” Mom retorts, “If you don’t want me to be sad then you shouldn’t leave.” Not missing a beat, the two return to admiring their prized collection of posters.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“I have this rare disease, but maybe I can turn it into a strength to help others.” Though the illness has brought Josy many restless and fearful nights, she is determined to pursue her purpose in life. With this faith, Josy and her mom personally wrote and delivered a petition letter to the Chief Executive of Hong Kong in 2017, appealing to the government and pharmaceutical companies for greater patient assistance. Despite having to rely on her mother for basic tasks like reaching an itch or holding a pen, Josy and her mom didn’t give up. “Although Josy might be able to receive medical support, if other children can receive assistance through her efforts, that would be great. Maybe that’s her God-given mission in life.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-11.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-12.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eFighting for treatment, “If you don’t save them, they don’t stand a chance”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe year spent waiting was agonizingly long. Josy’s friends passed away one after another, with 14 patients passing in total. “It was a tough year, there were memorial ceremonies held almost every month.” Describing it as a humanitarian intervention, Josy and her mom enthuse, “You have to save the worst ones first. The sooner the better, it’s a race against time. Our biggest wish is for every SMA patient to receive treatment as soon as possible. If you don’t save them, they don’t stand a chance!” The government finally accepted their proposal, launching an aid program a year later. Altogether, there were 8 patients including Josy who were granted the new drug in the first round.\u003cbr\u003e\u003cbr\u003eBefore the new medication, Josy was in the hospital every two months, even being admitted into the ICU. The main symptoms were pneumonia and a collapsed lung. There’s been significant improvement with the new medicine. “My breathing has improved, now I only need to use the ventilator when I sleep. My typing has gotten faster, and I can even feed myself sometimes. I used to need a lot of extra time for exams. One exam would take me 4 to 5 hours to finish, it was really taxing. It’s gotten a lot better though!”\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e\"Mom sometimes teases me. She says if I get one less A on my exams, I’m not getting any dinner.” “I say yeah, it is a big deal. If I get one less A, we might not have food on the table. We won’t even have time to check out hot guys!” With the motto “Pass 3, break 4 (GPA)”, Josy is a certified optimistic jokester. Though cheerful by nature, Josy too has her moments of weakness. “I debated for over a year on spinal surgery.” Despite the promise of being able to sit up after the surgery, Josy was put off by the potential risks, “I might die!”.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-13.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-16.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eRidiculed for attending a “retard university”, Josy laughs it off\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I want to go back to school. I want to sit with my classmates during class!” This became Josy’s motivation for overcoming her fears and undergoing surgery. Good things come in pairs, through her hard work and dedication, Josy was admitted to the University of Hong Kong. “Someone said I’m going to ‘retard university’. It usually comes from the elderly, they don’t understand.” Treating it as a joke, Josy took the low blow like a champ.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“If you don’t want others to discriminate against you, you must first stop discriminating against yourself.” This open-mindedness has allowed Josy to make lots of friends at university, but university life hasn’t been all smooth sailing. With one set of medical equipment to split between two homes, Josy can only choose smaller and lighter pieces of equipment to move to her school dorm. After class, she has to lug the equipment back home. Josy pointed out that a lot of the equipment is dated and beyond repair, but she lacks the resources to replace them. “If both beds are broken, I can only afford to replace one of them.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWith a cheeky smile, Josy says she’s been forced to become a ‘deadline fighter’. “There are so many essays to write, it’s never-ending. Since we’re poor, I’m dependent on my scholarship to pay for the dorms, school expenses, and transportation so there’s pressure to keep my grades up.” Another difficulty has been trying to replace her laptop. The only model suitable for her needs has been discontinued. Josy worries that she’ll have to spend a lot more time on homework and exams if she’s unable to find a suitable laptop in the future.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-14.jpg?v=1773971416\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-15.jpg?v=1773971417\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eWhat is spinal muscular atrophy (SMA)？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eSpinal muscular atrophy is a progressive neurodegenerative disease characterized by weakness and muscle wasting (atrophy). It is a genetic condition caused by the deterioration of nerve cells in the spinal cord, leading to impaired movement of all 4 limbs. Patients have trouble performing basic activities such as standing, walking, turning, controlling their head and neck muscles, etc. In severe cases, breathing, coughing, and other gag reflexes are greatly affected. A patient’s chance of survival is dependent on the degree of degeneration of their respiratory muscles.\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\"\u003eSupplies needed\u0026nbsp;\u003c\/span\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e(estimated expenses)\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003ePhysiotherapy \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; HK$1,200 up \/ 45 minutes\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eOccupational therapy \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; HK$1,200 up \/ 45 minutes\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eSpeech therapy \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp; HK$1,000 up \/ 45 minutes\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eInitial assessment for speech therapy\u0026nbsp; \u0026nbsp;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;HK$1,000-$1,200\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eSputum suction machine \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;HK$1,700\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e*\u0026nbsp; In addition, a suitable laptop and an additional set of medical equipment for dormitory use are needed\u003c\/span\u003e\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Josy Chow","offer_id":43243479072886,"sku":null,"price":400.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3617-00.png?v=1773971342"},{"product_id":"罕病小姊弟-陳嘉華-陳宥臻","title":"Siblings with rare diseases - Chan Ka Wa ; Chan Yau Chun","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/J_9-99iBob8\" title=\"【#透視罕見病】全球僅兩宗 罕病小姊弟 以笑抗逆 - 「遺傳性痙攣性下身麻痺」\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eThis is a story of a family of five. Two children suffer from serious illnesses, but the family could only afford treatment for one. Overwhelmed by the devastating trials and tribulations, the mother of these children was later diagnosed with depression. This downturn of events is even more tragic than those in Korean dramas. But how did this family of five choose to face their hardship? With their courageous smiles.\u003c\/span\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-05_1d7f1d3e-267c-4ecd-acf9-1cd837886639.jpg?v=1773975784\" alt=\"\"\u003e \u003cspan\u003eWhen we visited the Chan family for the first time, what impressed upon us apart from the rarity of the disease was the incessant laughter at their home. But behind the layers of laughter were hard, tormenting days. Chan Yau Chun, the youngest son, and Chan Ka Wa, the second daughter of the Chan family suffer from Hereditary Spastic Paraplegia (HSP). HSP is a rare inherited disorder. Even rarer is having a pair of siblings in the same family suffer from HSP – there are only two recorded precedent cases worldwide. Symptoms of HSP include damage to the nervous system, causing weakness and stiffness in the leg muscles. Patients with severe HSP symptoms rely on wheelchairs to carry them around.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eMrs Chan used to be optimistic and cheerful. But the onslaught of these unfortunate events had her falling victim to depression. She now requires psychiatric and psychological treatment to withstand the daily tribulations.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“There are only two families in this world like us, we are the second.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThe odds of what transpired in the Chan family are even slighter than getting the lottery. Yet, they were dealt with these cards. 11 years ago, the Chan family welcomed their second daughter, Chan Ka Wa. But the good times are short. Not long after Ka Wa was born, Mrs Chan started noticing Ka Wa’s abnormalities when she walked. She was slower than other kids and her strides were unsteady. When she reached the age of 3, Ka Wa was admitted to the hospital because of a cramp and the doctor at the time said she had epilepsy. This was just the beginning of a very long nightmare, as the same condition repeated with their youngest son, Yau Chun.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-01.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-02_e424f679-1155-4c62-9c1d-82c6a7adc5ad.jpg?v=1773975784\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eThe Mystery Cases of the Chan Siblings\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003e“Yau Chun didn’t know how to walk when he was 1, and I began to wonder if he was having the same condition as Ka Wa. So I brought them to the hospital for genetic testing,” Mrs Chan recalled. Doctors at the Queen Mary Hospital diagnosed that Yau Chun’s condition was similar to that of Ka Wa, only that was much more severe. These were very rare cases. At that time, the doctors were unable to determine whether their conditions were caused by gene mutation, or even what kind of disease they were suffering.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I couldn’t even fathom the news. It was just too hard to accept,” Mrs Chan said.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eWhen Ka Wa and Yau Chun were born, the doctors confirmed that they were in good health. No one would have foreseen that a rare disease would become their companion from such a young age. Mr and Mrs Chan made every effort possible to seek medical treatment for their children. They tried heading to Guangzhou and Zhongshan, and even ask relatives for financial support. With a strained smile and tears streaming down her face, Mrs Chan recalled those bitter memories, “There was no one back home who wanted to offer help. They only questioned why I gave birth to two sick kids”.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-03.jpg?v=1773975773\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-04_d08495fc-91fc-43ed-aa1c-4c49d2ae67e0.jpg?v=1773975784\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSevere Hip Dislocation. Fear: Unsuccessful Surgery May Cause Paralysis\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4 class=\"table-col half-col\"\u003eThe Chan siblings are as jovial as little piglets in fresh mud. Their eyes would turn into smiling crescents as constant cackles filled the air. It is disheartening and tragic that these pair suffer from the same incurable disease at the same time.\u003cbr\u003e\u003cbr\u003eThe first time Yau Chun was sent to the Intensive Care Unit, he did not wake up for two days.\u003cbr\u003e\u003cbr\u003eEvery night, Mr and Mrs Chan would each accompany one of the Chan siblings to bed. They would hold their hands for the whole night and check up on them at every twist and turn. When the Chan siblings were later arranged to reside in nursing dormitories, Mrs Chan would frequently remind the nurses to pay extra attention during their night patrols. Mrs Chan explained, “They get cramps at night when they sleep, and they wouldn’t be conscious.”\u003cbr\u003e\u003cbr\u003eOften drooling, Yau Chun could only pronounce simple sounds like “um” and “ah”. He needs to rely on a specifically designed wooden chair to sit properly. Yau Chun’s condition is complicated. He suffers from convulsions, epilepsy, intellectual disability and developmental delays. Last year, his hip bone started to dislocate due to tensions in the nerves. His left hip is displaced by 20% and his right hip is dislocated by a staggering 60%. This affected his hip joints. His doctor has suggested cutting the nerve endings behind the spine, but there are possible risks of infections.\u003cbr\u003e\u003cbr\u003e“If the condition is not dealt with, the condition will worsen. But we are very worried that the surgery is high risk.” Faced with the dilemma, Mr and Mrs Chan’s days are filled with constant fear and anxiety. “We are frightened that he will become totally paralysed. If that happened, he won’t even be able to control his bowel movement in the future, and there won’t be any chance of him ever standing up again.” Finally, the doctor advised doing a comprehensive consultation again before making the decision.\u003c\/h4\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cimg alt=\"\" src=\"https:\/\/www.lifewire.hk\/uploads\/images\/source\/5ea039f6bcd581.jpg\"\u003e\u003c\/span\u003e\u003c\/div\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-06.jpg?v=1773975771\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-07.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eDeteriorating Legs Requiring Dozens of Injections\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eThough Ka Wa’s condition is not as serious as Yau Chun’s, she often had cramps in the middle of the night during her kindergarten age. Hospital visits became the norm. After Ka Wa moved into the nursing dormitories, Mrs Chan’s anxiety did not lessen much. “Every time the school or the nursing centre called, my heart would skip a beat. I’d think to myself that there must have been an accident!”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eKa Wa gets cramps twice a day. Every month, she would need to be admitted to Queen Mary Hospital two to three times. “Her face would turn purple, and she wouldn’t be able to breathe, so we must call the ambulance.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eDespite being attached to a wheelchair and needing some assistance in taking showers and going to the toilet, Ka Wa can handle most basic daily tasks. She has been trained by Mrs Chan to help with “significant tasks”. With Ka Wa’s bigger sister accompanying her, Ka Wa can now wheel herself to the market and buy groceries. However, the condition of Ka Wa’s legs is worsening by the day. She could barely walk with someone holding her. As she spends most of the day sitting, her waist and back muscles are also getting weaker by the day.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I get so hot when I walk. I’ll get super sweaty just trying,” said Ka Wa, who was perspiring profusely. To improve the condition of her legs, she has to endure long-term medical injections. Mrs Chan felt sorry for her daughter, saying, “She needs to undergo dozens of injections on her pair of legs.” Alternatively, Ka Wa can choose to go through surgery to relax the tendons and insert a pump inside the body. The drugs can be directly injected into the pump every two or three months and the pump can release the drugs regularly to the rest of the body. This can reduce the pain, but the risks are unknown. Even the doctor does not recommend it. So, they decided to wait till she is older before trying this method because it seems like no children have ever tried it before.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“Ka Wa was scheduled to try on new treatments, but because Yau Chun was admitted to the hospital during that time, we didn’t end up taking Ka Wa to the trials.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-08_6e08aa0b-e30d-4f38-8520-263d10373def.jpg?v=1773975784\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-09_acd95721-7640-481e-b5f6-eb6b8f56b289.jpg?v=1773975784\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eParents Felt Helpless. They Could Only Afford to Treat One Kid Out of the Two\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eIn order to take care of Ka Wa and Yau Chun, whose conditions are worsening each day, Mrs Chan could only stay home and be a full-time mother. Mr Chan, who works as a construction worker, is the sole breadwinner of the family.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“It is quite exhausting!” sighed Mr Chan, “Sometimes when Yau Chun is admitted to the hospital, I need to take at least two days off. If the construction project has a tight timeline, then I’d be in trouble. If I ask for leave, I’d be fired.” On the one hand, Mr Chan has no spare time to spend with his kids. He also has trouble paying the hefty medical bills. Exasperated, Mr Chan said, “We spend as much as we can on medical expenses. If both of them need to see the doctor at the same time, we’ll definitely not be able to afford it. We can only do it one by one.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eLast year, a friend of the Chans introduced a chiropractic treatment for the siblings, which seemed to be helpful to their condition. However, a course of 12 treatments would cost up to tens of thousands of dollars. For the Chans who were struggling to hold the family together, this was difficult. Because Ka Wa’s condition was better than Yau Chun’s, they decided to prioritise Yau Chun and let him get the treatment first.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eOnly able to treat one of the siblings, the Chans felt desperate and helpless. Destitute, they could only rely on the subsidies in public hospitals to treat Ka Wa. To compensate for Ka Wa, they would self-administer stretching and leg split exercises at home with Ka Wa at night.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-10.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-11.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eA Mother’s Anxieties Turned Illness: Panic Attacks and Emotional Disorders\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eThe incurable problem and chronic stress have resulted in Mrs Chan being diagnosed with depression, requiring psychiatric and psychological therapy.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“The doctor told me that I suffer from panic disorder and emotional illnesses. I couldn’t believe it. These few years have been very tough. In and out of the hospital all the time. I feel like I can’t breathe sometimes, and I would often feel faint. It feels like I’m short of breath easily...those are scary hyperventilating episodes,” Mrs Chan told us.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eKa Wa who was giggling on the side was shocked to see her mother tear up. With a tight smile, Ka Wa wisely put her hand on her mother’s back, soothing that deep, invisible scar. Mrs Chan immediately smiled and said, “Good girl. Good girl.” A little sweetness in the mix of bitterness.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-13_354308db-0bb9-4c0f-a548-afbe7b14bdda.jpg?v=1773975785\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-14_df457d26-5cf6-45a8-bd2a-d265da05e0e8.jpg?v=1773975784\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-15.jpg?v=1773975773\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-16.jpg?v=1773975773\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eElder Daughter Yi Lin Becomes Parents’ Right Hand\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eIt is impossible for Mrs Chan to carry all the responsibilities that come with daily visits to the hospital. 15-year-old elder daughter Yi Lin plays a pivotal role in the household.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eMrs Chan explained, “If dad is at work and we want to go out, we will need Yi Lin’s help. If she’s at school, we won’t be able to head out and we must stay at home.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eTaking care of her younger siblings, her studies and her mother’s health, Yi Lin admitted that she was under a lot of pressure. “Every time I see my mother working so hard, I will tell her to rest up, rest up and rest up.” Yi Lin tried to hold in her tears but tears still flowed involuntarily. Even at a young age, Yi Lin was already shouldering a lot of weight. “I’m mum and dad’s assistant. If mum is here, I will help out to do dad’s duties. If dad is here, I will help out to do mum’s duties.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWhenever younger siblings come home from the nursing dormitory on weekends, Yi Lin tries to accompany them as much as possible and patiently teaches them word by word. “I know that Yau Chun loves listening to music. With some music, he would turn super happy. Then I would play with him, directing him to use his hand or play games by holding his hand.” On weekends, the Chan family spends them with laughter and play.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-17.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-18_3cb987ab-de46-405f-9542-b628b09c1718.jpg?v=1773975785\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eCompared with girls of the same age, this elder sister is very mature and dependable. She’s her brother’s interpreter and telepath. She can fully grasp what Yau Chun is thinking based on the smallest of movements. “Oh, he wants to watch this game!” During our visit to the Chan’s, when Yi Lin felt sad and cried, Ka Wa and Yau Chun followed suit and wept together. Three siblings crying and laughing together was the epiphany of family and connectedness.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eDespite the tribulations, this family is signified by mirth. Laughter, positivity and warmth filled the air on the day of our visit. If someone mentioned the darker days and experiences, another family member would turn tears into laughter using simple words and action. It is truly a vibrant and authentic home. Mr and Mrs Chan only wish that their kids can grow up being happy individuals, and do all that they can in their power to provide for them.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-20_47339075-ebd4-4c45-8e33-a104f0004d1b.jpg?v=1773975785\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-21.jpg?v=1773975772\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-12_c7707f00-aa43-44a6-b00c-d216842a9cad.jpg?v=1773975786\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-19_bc67f6a9-2fc2-441b-9211-f19927da72a2.jpg?v=1773975785\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e\u003cspan\u003eWhat is Hereditary Spastic Paraplegia (HSP)?\u003c\/span\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eHereditary Spastic Paraplegia (HSP) is also known as Familial Spastic Paraplegia (FSP). It is a neurodegenerative disorder, characterized by weakness and spasticity (stiffness) in the legs. Mild difficulty in walking and leg stiffness may occur at the onset of the disease. Eventually, the patient may require a wheelchair to assist in mobility. A “purer” form of HSP is primarily characterized by spasticity and weakness in the lower body. A more “complex” form of HSP can be accompanied by other symptoms, including spasticity, epilepsy, cerebellar atrophy, intellectual disability and other peripheral neuropathies or disorders in other systems such as diabetes, retinal diseases and developmental delays.\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSeeking Sponsorship to Purchase New Wheelchair\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eIn fact, Yau Chun, who has difficulty with eating, drinking and going to the toilet by himself, has the capacity to think and understand to a certain degree. But he cannot speak the words. It is as if a soul is trapped inside a body.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eUsing his hands to control his wheelchair is an impossible task. During a trial session for an advanced wheelchair, his occupational therapist once asked him to try and use his chin to control it. At that moment, when he reeled around excitedly, he was a caged bird who had regained his freedom. When the trial was over and he was taken back to his ordinary wheelchair, Yau Chun burst into tears because he knew that he was back in the passenger seat, unable to control his own fate. His occupational therapist mentioned that Yau Chun can control the wheelchair with his chin very well. However, such a wheelchair costs more than a hundred thousand dollars, and there was no way the family could have afforded it. Mr and Mrs Chan hope that there would be institutions and philanthropists out there to help fund and find Yau Chun’s dignity in living life.\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eHow to support Ka Wa and Yau Chun? Donate now!How to support Ka Wa and Yau Chun? Donate now!\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable cellpadding=\"5\" cellspacing=\"0\" border=\"0\" class=\"gen\"\u003e\n\u003ctbody\u003e\n\u003ctr class=\"odd\"\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003eHealthy footwear x 1 pair\u003c\/strong\u003e\u003c\/td\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003e\u0026nbsp;Around\u0026nbsp;$400\u003c\/strong\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"even\"\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003eChiropractic treatment package (12 times in total)\u003c\/strong\u003e\u003c\/td\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003e\u0026nbsp;$9720\u003c\/strong\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"odd\"\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003eElectric chin control wheelchair x 1\u003c\/strong\u003e\u003c\/td\u003e\n\u003ctd class=\"\"\u003e\u003cstrong\u003eAbove\u0026nbsp;$130,000\u0026nbsp;\u003c\/strong\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cbr\u003e\u003cspan\u003eInterview and writing by Doriz Lee and Rochelle Leung\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eEdited by Rochelle Leung and Avy Ip\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePhotography by Sea.Pho.Yea and Ken Mok\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eVideography by Lifewire, Ken Mok and\u0026nbsp;Sea.Pho.Yea\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eMarch, 2026 Updated\u003c\/span\u003e\u003c\/p\u003e\n\u003cp\u003e\u003ciframe title=\"宥臻終可頭控輪椅開心笑🧑🏻🦼 #慈善 #病童 #護聯網 #眾籌\" src=\"https:\/\/www.youtube.com\/embed\/9nWmhxBvIkc?si=bzh0r1VTGuTb5tzC\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eYau Chun Can Finally Control His Wheelchair and Go Wherever He Wants\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eChan Yau Chun, who shares the same hereditary spastic lower limb paralysis with his older sister, cannot speak and is unable to control his limbs, making it impossible for him to use a regular electric wheelchair. He relies on his mother to push him around.\u003c\/h4\u003e\n\u003ch4\u003eIn 2021, Lifewire raised over 100,000 HKD to purchase an electric wheelchair for Yau Chun, which was modified for chin control. However, due to changes in his condition, he began to find chin control unsuitable.\u003c\/h4\u003e\n\u003ch4\u003eLast year, a therapist found a head-controlled driving system for the wheelchair, but it cost over 10,000 HKD, which was unaffordable for Yau Chun's financially strained family.\u003c\/h4\u003e\n\u003ch4\u003eThanks to everyone's donations, Yau Chun was finally able to purchase this system and modify his wheelchair.\u003c\/h4\u003e\n\u003ch4\u003eNow he is actively practicing driving at school, maneuvering smoothly and going wherever he wants, with a big smile that even a mask can't hide.\u003c\/h4\u003e\n\u003ch4\u003eThey gain more control over their lives and more dignity.\u003c\/h4\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eNovember 2025 Update\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eCongratulations to Chan Ka-wah, an athlete with Hereditary Spastic Paraplegia (HSP), on becoming a world champion!\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eAfter making her debut representing Hong Kong in June and winning second place at the 2025 World Para Athletics Grand Prix in Paris, Ka-wah has now achieved another outstanding milestone at the recently concluded 2025 World Abilitysport Games in Thailand.\u003c\/h4\u003e\n\u003ch4\u003eShe secured gold medals in the women's shot put (F31, F32, F33 classes) and the women's javelin (F31, F33 classes)—finally earning the title of world champion!\u003cbr\u003eAdditionally, she won a silver medal in the women's discus throw (F33 class), bringing her total for the competition to an impressive 2 golds and 1 silver!\u003c\/h4\u003e\n\u003ch4\u003eWhat an inspiring achievement!\u003c\/h4\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eApril 2025\u003cstrong\u003e \u003c\/strong\u003eUpdate\u003c\/span\u003e\u003c\/p\u003e\n\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/LWwa8bUm5oo?si=JJWIDVIOkIjwr3oP\" title=\"🤩不能說的宥臻🤫用👀控電腦不求人🤩\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_3ef43a63-cd7c-43b6-ba7e-248ce7cc4d92.jpg?v=1780467560\"\u003e\u003c\/p\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch3\u003e\u003cimg alt=\"\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSupporting Yau Chun, Who Cannot Speak, to Operate a Computer Independently by his eyes\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eYau Chun, who is unable to speak and has limited use of his hands to operate a computer, can finally take charge and control the computer on his own! With the assistance of school social workers and therapists in selecting the right tools, Lifewire has provided a donation to help You-Chen purchase a smart communication system valued at over thirty thousand dollars. This system allows him to use an eye-tracking device to control the computer through eye movements.\u003c\/h4\u003e\n\u003ch4\u003eNow, Yau Chun can not just only choose cartoons to watch on YouTube independently but also expresses himself joyfully through laughter. Recently, he demonstrated this technology at a school event for guests, showing impressive skills!\u003c\/h4\u003e\n\u003ch4\u003eYau Chun, who shares a genetic condition causing lower body paralysis with his sister, Ka Wa, can only control his wheelchair using his chin due to limited hand strength.\u003c\/h4\u003e\n\u003ch4\u003eTypically, his family relies on \"mind-reading\" and his facial expressions to gauge his thoughts and communicate. His mother, Mrs.Chan , expresses her gratitude to all the generous donors whose contributions have made it possible for Yau Chun to achieve his wish—to express himself and engage in activities he enjoys, such as watching cartoons!\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cp\u003e\u003cimg style=\"display: block; margin-left: auto; margin-right: auto;\" alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_b290d2f6-12a1-4a41-9463-e8ce11609310.jpg?v=1780467749\"\u003e\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eAug 2021\u003cstrong\u003e \u003c\/strong\u003eUpdate\u003c\/span\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cbr\u003eThe incurable problem and chronic stress have resulted in Mrs Chan being diagnosed with depression, requiring psychiatric and psychological therapy.\u003c\/h4\u003e\n\u003ch4\u003e“The doctor told me that I suffer from panic disorder and emotional illnesses. I couldn’t believe it. These few years have been very tough. In and out of the hospital all the time. I feel like I can’t breathe sometimes, and I would often feel faint. It feels like I’m short of breath easily...those are scary hyperventilating episodes,” Mrs Chan told us.\u003c\/h4\u003e\n\u003ch4\u003eKa Wa who was giggling on the side was shocked to see her mother tear up. With a tight smile, Ka Wa wisely put her hand on her mother’s back, soothing that deep, invisible scar. Mrs Chan immediately smiled and said, “Good girl. Good girl.” A little sweetness in the mix of bitterness.\u003c\/h4\u003e\n\u003ch4\u003eDuring an earlier interview with Mrs Chan, she mentioned that the occupational therapist suggested that Yau Chun try on the electric chin control wheelchair. Yau Chun was like a caged bird who had regained his freedom, reeling around excitedly. However, such a wheelchair costs more than a hundred thousand dollars, and there was no way the family would be able to afford it. We noticed that when Mrs Chan called to send us her thanks and gratitude, her voice was noticeably happier and relaxed. Thank you all for your generosity and kindness, which has brought a silver lining for this pair of siblings.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_67781444-07ca-4c54-afab-bcb921d0d32f.jpg?v=1780468121\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_2d2a6caf-c8e0-415d-bfbd-2e514ed40e3c.jpg?v=1780468121\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cspan\u003eMarch 2021\u003cstrong\u003e \u003c\/strong\u003eUpdate\u003c\/span\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eConvulsions worsening for Brother Yau Chun\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eYau Chun was admitted to the hospital in November last year. Because the number of convulsions became very frequent, and each convulsion lasted for more than 10 minutes. Every time medication was administered, it would take about 5 minutes before the convulsions would stop. The doctor considered that his situation was critical. In December, after doctor’s consultation, it was believed that a “trial injection” can be arranged, so that the necessary medication can be delivered from within the body regularly.\u003c\/h4\u003e\n\u003ch4\u003eSeparately, because Yau Chun couldn’t control his wheelchair with his hands, he could only use his chin to control an electric chin control wheelchair. But this required over $100,000, and the parents could not possibly afford it. After a few months of fundraising, your generosity has helped the Chans overcome this difficulty. However, this wheelchair is out of stock at the moment. Social workers are out searching an available one for Yau Chun. We hope that Yau Chun can get a new wheelchair soon and rediscover that dignity that he deserves!\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSister Ka Wa Undergoing “Trial Injection” for Surgery\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eKa Wa, whose condition was not as serious as Yau Chun, was arranged to go through an injection trial recently, to prepare for surgery to loosen the tendons. Ka Wa requires regular injections to relieve the stiffness in her legs. Some two years ago, the doctor suggested to undergo a surgery to loosen the tendons. But because no children in Hong Kong had ever undergone this surgery before, the Chans were worried about the risks and so they left it aside. This year, the doctor considered that Ka Wa’s condition was suitable, therefore rearranging an injection trial. If the feedback of the trials are positive, Ka Wa can proceed with the surgery to loosen the tendons and insert a pump inside the body. The drugs can be directly injected into the pump every two or three months and the pump can release the drugs regularly to the rest of the body. Though Mrs Chan is worried about the risk of the surgery, she would also wish for her daughter to suffer less.\u003c\/h4\u003e\n\u003ch4\u003ePlease join us in making \u003ca href=\"https:\/\/lifewirehk.typeform.com\/to\/dqq6Aw?typeform-source=www2.lifewire.hk\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003emonthly donations\u003c\/span\u003e\u003c\/a\u003e to support this pair of siblings in their long-term medical care.\u003c\/h4\u003e\n\u003ch4\u003e\u003cimg style=\"display: block; margin-left: auto; margin-right: auto;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_9818788c-fd91-44c9-89e4-ee9150e2f6c6.jpg?v=1780468432\" alt=\"\"\u003e\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Chan Ka Wa ; Chan Yau Chun","offer_id":43243479040118,"sku":null,"price":390.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3614-00.jpg?v=1773975736"},{"product_id":"兄弟同患黏多醣-許偉翔-許承皓","title":"Brothers with Mucopolysaccharides -  Wai Cheung; Shing Hao","description":"\u003ch4\u003e\u003cspan\u003e“Sometimes, when I see the two boys fighting over toys, I’m really happy” Wai Cheung and Shing Hao’s mother said, tears turn into smiles, “because when you know how to fight for toys, it makes them seem more like normal children.” A typical mother’s frustration, for Wai Cheung and Shing Hao’s mother, is a blessing.\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-01.jpg?v=1773980107\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-02.jpg?v=1773980106\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eWhen Wai Cheung and Shing Hao’s mother sat down on the sofa to have an interview with us, the elder brother Wai Cheung (8 years old) was busily playing on the side, while the little brother Shing Hao (4 years old) leaned on his mother and played with her, and while at other times he walked around with toys and waved them around ‘never stopping’. Both brothers are like their peers in terms of appearance and mobility. Whenever their mother bursts into tears while saying something upsetting, Shing Hao will cuddle up to her and comfort her, saying, “don't cry, mummy.”\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-04.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-06.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eThe TV cabinet next to the sofa is filled with family photos: young Wai Cheung riding on a firefighter's motorbike, leaning in the arms of his father, who is wearing a paramedic's uniform; his mother holding her swaddled son, the younger brother, Shing Hao; and the monthly headshots of Shing Hao from birth to the age of one....... Each one carries the parent's longing for their children's future. However, for Wai Cheung and Shing Hao’s parents, the typical parental wish is considered a luxury.\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWai Cheung and Shing Hao’s mother recalled that when Wai Cheung went to the clinic at the age of two, the medical staff found that he was half a year behind his peers in terms of language skills and the development of his large and small muscles. After several referrals and blood tests at the genetics department, they discovered he had Mucopolysaccharidosis 3A when he was five. His parents then immediately took his one-year-old brother for tests, and unfortunately, he was also found to have Mucopolysaccharidosis 3A.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-03.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-05.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eOne out of every 70,000 people has this disease\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003c\/div\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch4\u003eMucopolysaccharidosis 3A is a hereditary congenital disease in which a deficiency in enzymes that break down Mucopolysaccharides leads to a build-up of Mucopolysaccharides in the body, which destroys cells. Symptoms of Mucopolysaccharidosis 3A may not be apparent in infancy, but as more and more cells are destroyed, symptoms will emerge, such as gradual problems with intelligence, internal organs, loss of language and understanding, and eventually the inability to move, with an average life expectancy of about 14 years. According to a study in the UK, the disease affects about one in every 70,000 newborn babies.\u0026nbsp;\u003c\/h4\u003e\n\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eOlder brother ‘overage’ not eligible for trial treatment\u0026nbsp;\u003c\/strong\u003e\u003c\/span\u003e\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/div\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch4\u003eDoctors at the Hong Kong Children's Hospital immediately helped arrange for the younger brother to undergo a stem cell transplant in the UK, an experimental programme for only six children. However, the programme only accepts patients under the age of two, and his older brother was already ‘overage’, but the family was unwilling to give up any hope: “We took him(Wai Cheung) to the UK with us and begged the doctors to help him, but they said his condition was so serious that no matter how much money is spent on helping him, there is no chance he will get better, so it's just a waste of effort”. Their mum choked up as she said that.\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-07.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-08.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eThe younger brother survived the treatment, and there is hope for his condition\u003c\/span\u003e\u0026nbsp;\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe treatment for his brother, who was lucky enough to receive it, was not easy to go through: he had to stay in the hospital for five weeks while doctors harvested stem cells from his bone marrow to transform them and put them back into his body. ‘After two or three days, he started to feel sick, he was so sick, he was vomiting. His skin and nails were all replaced. His hair had to be basked in the sun and the inside of my mouth felt awful, like you had canker sores all over’.\u0026nbsp;\u0026nbsp;\u0026nbsp;\u003cbr\u003e\u003cbr\u003eAfter that, they went back every six months for follow-ups, which included bone marrow and blood sampling, computer sketching of the whole body and brain, and assessment of physical and mental development, cognitive ability, etc. The parents found that the younger brother's speech and walking skills were better than those of his elder brother at the same age. But because the treatment is still experimental, doctors are not sure if the disease can be cured. “The doctor said that he wants to see Shing Hao grow up and hopes that he won't be like his brother, whose condition deteriorate when he was five or six years old.”\u0026nbsp;\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-09.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-10.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eTheir mum’s only wish is to hear her elder son say ‘Mummy’ again\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe eldest son would look at his mother with a smile whenever she spoke. His mental and physical abilities have deteriorated to infancy, and he is now attending a school for severely mentally handicapped children, where he needs assistance with eating and drinking with a feeding syringe. He falls easily and is unable to urinate and defecate on his own, and has to take medication to alleviate his constipation.\u0026nbsp;\u003cbr\u003e\u003cbr\u003e“My son has gone from knowing how to call his mum and dad to not knowing anything at all. He doesn't even know that we are his mum and dad, and any outsider can just drag him away,” said his mum, wiping her tears. “I just want to hear my son call me ‘Mum’ again because I haven't heard it for two or three years.”\u0026nbsp;\u003cbr\u003e\u003cbr\u003e“When I play the songs that he has been listening to for a long time, and I see him smiling, that means he has at least a few memories.” However, he no longer knows how to play with toys, “he mostly holds them in his hands and walks around, but he must not put them in his mouth.” Because he often puts things within his reach into his mouth and chews them, and recently he has bite his own finger until it hurts.\u0026nbsp;\u003cbr\u003e\u003cbr\u003e“Sometimes when I’m not looking, he eats and dissolves the tissue paper in his mouth, but he doesn't know how to swallow it.” Once, his younger brother was playing with a stapler and got staples all over the floor, “at that time, my older son knew how to pick it up, but he no longer knows how to do it, and he took some of the staples and put them in his mouth. When I came out of the kitchen, I saw him chewing, and found seven or eight staples in his mouth, which he didn't know how to swallow.”\u0026nbsp;\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-11.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-12.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eRelying on sleeping pills to fall asleep at a young age\u0026nbsp;\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eLike many Mucopolysaccharide 3A patients, her elder son also had difficulty sleeping, waking up every night to sit in bed. He sometimes takes sleeping pills prescribed by his doctor to help him sleep. Doctors estimate his life expectancy to be no more than 14 years old, ‘he is already having problems with his water intake, and I think, “How much time does he have to eat normally?” , “I hope that his condition will not deteriorate, and that he won’t be in a worser condition, and that he will not need to have a gastrostomy. Even if he doesn't get better, we hope that he can maintain the condition as it is.” Tears were falling from the mother's eyes.\u0026nbsp;\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eThe younger son is their mum's little support\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe little brother then turned into a warm-hearted angel, wiping her tears with his little hands and hugging her. “My younger son is very good at sensing and feeling, he can comfort me when I am not happy, and he told me not to cry and he hugs me. Whenever someone cries, he knows how to comfort them.”\u0026nbsp;\u003cbr\u003e\u003cbr\u003eThe younger son, who is studying in a special childcare centre, was assessed by the school for his cognitive and linguistic abilities at about the age of two. He is often praised by his teachers for his good behavior and memory and remembers the names of most of the centre staff, teachers and classmates. His mother is very comforted and happy, and when he can name his classmates and his school life, “I would smile to myself”\u0026nbsp;\u003cbr\u003e\u003cbr\u003eThe younger brother is also full of curiosity and has a thirst for learning. Every time his mum asks a question, the younger brother replies earnestly. His mum hopes to seize this opportunity to instill knowledge into him, “Touch wood, if his condition worsens and his abilities really regress in the future, I hope this knowledge will impress him.”\u0026nbsp;\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-13.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-14.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eParents sharing the burden of care\u0026nbsp;\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDuring the interview, it happened to be the brothers' lunch time, and the mother had to feed the elder brother and take care of the younger brother's eating at the same time. Moreover, the two brothers were very curious and wanted to take part in the filming from time to time, so you can imagine that it was not easy to take care of them 24 hours a day.\u0026nbsp;\u0026nbsp;\u003cbr\u003e\u003cbr\u003eThe father, who works as an ambulanceman, must work in shifts to save lives in emergencies, which is stressful. However, after work, he helps share the household chores, buys groceries, and takes care of his two sons, and the couple works together to help them wash up: one is responsible for bathing, and the other is responsible for wiping their bodies, to share the pressure on the mother. “When dad opens the door, my eldest son will be so happy, jumping and laughing,” mom said.\u0026nbsp;\u0026nbsp;\u003cbr\u003e\u003cbr\u003eThe elder brother will also stick to his father and babbles like a toddler when he’s in a good mood. “He will only speak when he is in a good mood, and he will stare when he is not in a good mood. He smiled more when he was in a good mood, and sometimes he only laugh when he was being tickled,’ his father said with a smile whilst tickling Wai Cheung.\u0026nbsp;\u003cbr\u003e\u003cbr\u003eIf the brothers have to go out, they need their father and mother to come along with them, “each holding a son's hand, because my elder son is not as mobile as he should be, and he can easily fall down.” Sometimes, he would drag strangers or pull on their clothes, scaring passers-by.\u0026nbsp;\u003cbr\u003e\u003cbr\u003eThe mum said that her elder son, once pushed a child on a slide in the park, causing the parents to complain, “’How do you teach your children as a mum?\u0026nbsp; Your son pushes people’, I kept apologizing and explained that it’s because the child doesn't know it.” Some passersby even blamed her, saying “If your son is like this, you can’t bring him out on the street!”. Even at home, the neighbors complained, “the brothers run around a lot, and sometimes are very loud when they move a chair, and the neighbors downstairs complain about the noise”. The mother was already under a lot of pressure, and the criticism from others made her very stressed.\u0026nbsp;\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-15.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-16.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cstrong\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eMum's pressure skyrockets, and sickness invades her\u003c\/span\u003e\u0026nbsp;\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eShe said that when she first learnt that her two sons had a rare disease, she stayed at home almost every day for nearly nine months, not wanting to communicate with others and “not wanting to be looked at in a different way”. At night, she could not sleep: she was worried that her older son's health would deteriorate, and that her younger son's development would be the same as her older son's.\u0026nbsp; “I think God is really unfair, why is there something wrong with my own sons?”\u0026nbsp;\u003cbr\u003e\u003cbr\u003eIn addition, taking care of the two brothers made the mother exhausted and under too much mental pressure. As a result, her thyroid gland developed problems, with the thyroxine readings several times higher than normal, and she had to take medication to control her condition. In addition, the sarcoma in her armpit recurred, and she had to be admitted to hospital to remove it.\u0026nbsp;\u003cbr\u003e\u003cbr\u003eLuckily, there are some groups of mums who know about the brothers' situation and provide comfort, support and encouragement. Some parents in the neighborhood also gave toys and books to help each other.\u0026nbsp;\u003cbr\u003e\u003cbr\u003eMum has also learnt to take time to relax after the brothers have gone to bed by watching TV or webcasts. “Whenever I think about something, I watch TV to distract myself. I listen to people's jokes and don't think about my boys’ illnesses for a while,” she said, so that she can relax for a couple of hours. “My husband told me not to think too much, even if I think about it, I can't solve it right away.\"\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-18.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-20.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eUnder economic pressure, turning on the air conditioner is a luxury\u003c\/span\u003e\u0026nbsp;\u003c\/span\u003e\u003c\/strong\u003e\u003c\/h3\u003e\n\u003ch4\u003eThere are other matters that need to be solved, including expenses: medical bills for the sons, nutritional supplements, rehabilitation supplies, and the cost of the first trip to the UK for stem cell therapy was also borrowed from friends and relatives. ...... It's not easy to support a four-person family on Dad's income alone, so the couple saved as much as they could and considered turning on the air-conditioning a luxurious gesture, in the hope that the money from electricity bills could be saved and spent on their sons. However, they could not even afford to buy probiotics.\u0026nbsp;\u003cbr\u003e\u003cbr\u003e“In fact, my husband suffers from back pain all the time, probably because of his work and the fact that he does not have a good rest at home. I always tell him to see a doctor or a bonesetter, but it's expensive, so he doesn't want to see one and prefers to take his own medicinal oils,” mum said worriedly.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-19.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-21.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eThe brothers are prone to falls and want to strengthen training\u0026nbsp;\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe couple took their sons to the playground to play, the younger brother immediately ran like a runaway horse, while the older brother slowly climbed up the climbing facilities, both sways left and right when walking, the physiotherapist reminded that the two brothers' unsteady steps need to be strengthened to improve muscle training, improve balance, and take bone nutritional supplements. The school arranged for his elder brother to have a hydrotherapy session once a month, which was not enough, but the fee of about $500 per session was unaffordable. Mum could only stretch his muscles every day to slow down the deterioration and do her best within her ability.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eGrab the chance to capture the joyful moments of the family of four!\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eLiving under the shadow of rare disease, the family doesn't know when their sons' conditions will decline further, and they can only look forward to the future, as father comforted his wife, “Don't think about it too much, just see how it goes”. And the mum replied, “I don't have any wishes for myself, ...... I just hope my two boys will live longer.” She just wants to take more photos of these moments, to record the time when her older son still doesn't need to be in a wheelchair, and the two brothers can still run and laugh, and still know how to play.\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“It has been difficult for our family to take photos. The other day, I took my older son to take a family photo, but he didn't smile, so it's hard for us to take a joyful photo”, the mother said disappointedly.\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eAlthough their dad doesn't have much time off, he and his wife have always strived for opportunities to bring their sons to Lifewire gatherings, so that they can experience more stimulation from the outside world. Seeing the smiles on the sons’ faces, their parents realized that for them, happiness is as simple as that.\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-22.jpg?v=1773980106\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-23.jpg?v=1773980107\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eMucopolysaccharidosis type 3A\u0026nbsp;\u003c\/span\u003e\u003c\/h3\u003e\n\u003cp\u003eMucopolysaccharidosis type 3, also known as Sanfilippo Syndrome, is a disorder in which the child has a mostly normal height and appearance. As the disease progresses, the hair becomes thicker, harder, and hairier than normal, and there is progressive impairment of the central nervous system (including retardation of intelligence and language development), hyperactivity, poor sleep, aggressive behavior, and gait disturbances.\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eSymptoms of the disease may not be apparent in infancy, and pre-school children may have developmental delays. However, as more and more cells are destroyed by the Mucopolysaccharides that have accumulated in the body, the symptoms appear one by one: the person becomes very active and has behavioral problems and an overwhelming interest in everything.\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eAs the patient becomes less responsive to their environment, they may like to rock or bite things to amuse themselves. Some children like to bite their hands, clothes, or anything within their reach.\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eThe average life expectancy is about 14 years. Children gradually lose their ability to speak and understand, control their bowel movements, and become increasingly unsteady, eventually losing the ability to walk or even becoming completely immobile.\u0026nbsp;\u003c\/p\u003e\n\u003ch3\u003eTreatment\u0026nbsp;\u003c\/h3\u003e\n\u003cp\u003eLike other Mucopolysaccharidoses III (B, C, D), Mucopolysaccharidoses III can only be treated symptomatically but not categorically. Scientists have started many medical studies to try to replace the enzymes that disappear in patients.\u0026nbsp;\u003c\/p\u003e\n\u003c\/div\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eSource: Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eInterview and writing: Rochelle Leung, Fiona Wong\u003cbr\u003eEditor: Rochelle Leung, Vicky Chan\u0026nbsp;\u003c\/p\u003e\n\u003cp\u003eTranslation:\u0026nbsp;Abigail Wu\u003cbr\u003ePhotography: Sea.Pho.Yea, Wallex Gim\u003cbr\u003eVideo production: Lifewire, Sea.Pho.Yea\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":" Wai Cheung; Shing Hao","offer_id":43243479367798,"sku":null,"price":380.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3628-00.jpg?v=1773980165"},{"product_id":"半癱少女愛探險-楊嘉瑩","title":"A girl with partial paralysis loves adventure - Kiki","description":"\u003ch4\u003e\u003cspan\u003e\"I want to go to Egypt to see the pyramids and the tombs of the Pharaohs\", \"I love history and want to see some ruins.\" When she was two years old, she was attacked by a rare type of cancer, glioma - a glial tumor of the spine. Kiki, who was born healthy and normal, left her paralyzed from the chest down, her life is threatened by sequelae. But limited mobility cannot limit unlimited dreams.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eThe sun shines into the bedroom, coating the photos on the wall with golden light, highlighting the precious scenes from more than ten years ago. It is a time that cannot be returned but is remembered fondly. The little girl in the photo is either standing in the playground or standing by the sea. \"When she was two years old, she knew how to walk, she knew everything.\" Her mother said, looking at the slightly yellowed old photo. Kiki (14 years old) in the wheelchair next to her pointed at one of the photos of her sitting on a hospital bed wearing a hat and smiled and said to her mother, \"I shaved off some of my hair at that time.\" \"You lost a lot of hair during chemotherapy.\" The mother and daughter recounted the unbearable past indifferently.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThe figure of Kiki running and jumping was frozen at the age of two. That year, Kiki suddenly continued to have a low fever for nearly a month. \"It's not good to constantly see a doctor. One day when I got home, I found that she was lying in bed and couldn't get up. No matter how I called her, she couldn’t get up. Her stomach was very bloated, so I went to the hospital with her right way.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-01.jpg?v=1773992523\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-02.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eAt that time, Kiki was already incontinent. The doctor examined her whole body and had an MRI. They found that her entire spine was a tumor and diagnosed her with a rare cancer - spinal glial tumor. The next day, she was immediately operated on for more than 10 hours to remove the tumor. \"The doctor said he had treated so many people, and it was the first time he noticed a condition like Kiki’s; it stems from a genetic mutation in the body, not genetics.\"\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eKiki was in a coma for nearly a month after surgery. Doctors found her lower body unresponsive and suspected to have died from nerve damage. From then on, she was unconscious from the chest down, with only limited mobility in her left hand, and she had to continue undergoing chemotherapy. Losing all her hair until she was discharged at the age of five.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-03.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-04.jpg?v=1773992523\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eThe aftermath of the surgery is the constant inability to take care of oneself\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe unconscious lower body is not only not able to feel cold and hot pain touch, but also cannot defecate normally, urinary and fecal incontinence, needing the mother to help press, everyday using a wheelchair to go in and out. Pressure sores caused by long-term sitting and lying pressure on the muscles can cause muscle necrosis, which can deteriorate into fatal sepsis ... Countless after-effects keep Kiki in and out of hospitals and operating rooms.\u003cbr\u003e\u003cbr\u003eThe husband, who works as a cook, was busy working and betting on horses, while the mother held her second son and ran around with her daughter seeking medical treatment. \"I can't believe why my daughter is like this, it is very unhappy, she would cry. I had just arrived in Hong Kong at that time, and I didn't speak Cantonese. The doctor told me a lot of things that I couldn't quite understand.” There was a language barrier, no way to ask for help, countless times waiting alone in the cold hospital corridors. \"Every time I wait outside the operating room, crying. I don't know if she can get out this time, that moment is very helpless.\"\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003ePlus, huge medical rehabilitation expenditures: medical supplies, follow-up visits, transportation, hospitalization, wheelchairs, diapers... But Kiki’s father spent his salary gambling, which made her mother stressed on the verge of bursting, she was emotionally unstable, and suicide thoughts kept popping up. “But then I thought, if I left Kiki, no one knows how to take care of her except me, so I can't bear it\", \"Seeing Kiki so optimistic and very nervous about their follow-up visits, seeing her daughter so persistent in wanting to survive would feel worth it no matter how hard it was,” Kiki’s mother said with tears in her eyes.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none; height: 832px;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-05.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-07.jpg?v=1773992523\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\"Reincarnation without a wheelchair\"\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\"She is my motivation to survive. Often when I can't think about it, I think of all that she has gone through, that moment is what motivates me to survive.\" Kiki needs her mother's care, and her mother also needs Kiki’s rescue, the two of them leaned on each other and cried.\u003cbr\u003e\u003cbr\u003eKiki, who goes through every surgery before the gates of hell, learns to see life and death from watching dramas. “Sometimes I see the heroes and heroines who seem to have a bad life, so reincarnation in the next life may be better, and then I think it doesn't matter”. Mother: \"She always said, people are going to die, why are you so nervous. Or: If you die, reincarnate earlier, you won’t have to sit in a wheelchair in your next life.\"\u003c\/h4\u003e\n\u003ch3\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-06.jpg?v=1773992524\"\u003e \u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eLuck and misfortune\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eSitting in a wheelchair, Kiki, who parked the wheelchair to the bedside, used her forearms to support the mattress and struggled to pull her upper body from the wheelchair to the bed. Her mother helped move her lower body to the bed and put her down to do her homework. “This sickness makes me almost completely numb. Maybe other girls have stomach pains when their period arrives, but I don’t feel anything at all.”\u003cbr\u003e\u003cbr\u003eKiki did not complain about the different experiences compared to her two healthy brothers: \"Maybe I think I'm just unlucky, but even luckier is that fortunately my brother is not like me, it is just me like that, that is good.\" She spoke calmly, but others heard her with a heavy heart.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e\"My family has a daughter who has grown all up \", to others is the joy of a teenager blooming, but puberty brings physical changes that worsen the aftermath, Kiki has to return to the hospital for follow-up visits two or three times a week, \"Before puberty, the condition was not as serious. I hear that I must see many doctors, do many surgeries, and sometimes I’m unhappy after a follow-up visit and hide in my room crying.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-08.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-09.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eSpinal surgery faces a life-and-death game\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\"She may be in much worse shape now because she has grown taller. Her waist is crooked, and her scoliosis is very serious.\" Her mother said the doctors suggested that Kiki have surgery as soon as possible. \"Put a steel pipe down the spine. But the surgery is very risky. It's possible that she won't be able to leave the operating room. I didn’t let Kiki do it...” Mom choked. “Mom doesn’t want to be without you.”\u003cbr\u003e\u003cbr\u003eKiki, who is unconscious in her lower body, often delays treatment because she cannot feel her physical injuries. Last year, she was admitted to the hospital twice to remove the necrotic and blackened muscle due to the worsening of pressure sores on her hip. She stayed in the ICU for more than a month. But the wound was often contaminated with excrement, easily infected, and has not healed so far. It has expanded to the size of a teacup, the doctors were helpless, it was like a time bomb. Her mother said that Kiki was prone to sickness since childhood. \"When she had a fever, I was very worried. Is it really as simple as a cold? But when I asked her to go to the hospital, she refused, saying the doctor wouldn't let her back out, it is a struggle every time.”\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eAnother person who didn't want Kiki to be hospitalized was her younger brother. \"When he sees his sister packing up to go to the hospital, he will cry and refuse to let her go, for fear that she will not come back,\" her mother said. The younger brother beside her scratched his head shyly.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-10.jpg?v=1773992523\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-11.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eDreams of exploring the world\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eKiki envied her brother for being able to go around, “I wanted to visit the (Victoria) prison he talked about, but it seemed like quite a lot of stairs,” and “He always told me how many things I hadn’t seen,” she said. “Want to go with your brother?” Kiki nodded vigorously, “But wherever my brother goes, I can’t go because it’s mostly up the stairs.” Are you disappointed? “A little bit, though you get used to it, it is like that every time, ever since childhood.”\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eShe loves to see graves and listen to ghost stories, and her dream was to be an explorer. “I want to explore the world, I love history, I want to see the historical sites, I want to know what happened.” Most of all, I want to go to Egypt to see the pyramids and the tombs of the pharaohs. I visited the urban legendary Bridal Pool before but could only see it from a distance from a high place.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e\"I couldn't go to many places in Hong Kong, let alone other countries, so I thought it was impossible and gave up on my dream of being an explorer. \"In the future? No, I will just simply do a clerical job, finding a job is enough.”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eKiki experiences a similar feeling of powerlessness almost every day: \"I tried to cook at school and wanted to try it when I got home, but the wheelchair but the kitchen is not wheelchair accessible.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e\"I really want to play the piano and play an instrument, but because I have to use both hands, using my left hand is not very convenient, so I can't play the piano.\" But I turned to the harmonica and harmonica’s can be played with one hand.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-12.jpg?v=1773992525\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-15.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eI'm looking for my own way\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I was so envious as a kid that people could walk and be able to go to the park and play. I can't do anything by myself. But when I grow up, I know that even if I can’t go to the park to play, I can do other things I can do.” Kiki, who loves dramas, comics and music, has shown her talents, singing with singers at a Yan chai charity event and won runner-up in a children's story telling competition.\u003cbr\u003e\u003cbr\u003eTurning the tablet on her desk casually, she was following the comic book \" Oshi No Ko\" about her acting idol. Kiki calls herself \"Edan Shi\" (fan name), she likes Edan Lui (Edan), also loves MC (Michael Cheung Tin Fu), and Yiu Sum Yuet (spinal muscular dystrophy patient https:\/\/rb.gy\/kdu9cn) and other classmates, went to see MC’s Street performance together.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eThe Lifewire team offered to make a short video for her to cheer up Edan and MC. She immediately thought about the content seriously and couldn't hide her bright smile: \"Edan, I really liked your performance in ‘be on game’ (television show). It was funny and you were showcasing your natural self on camera”, \"MC, although I can't go to your concert, I will silently support you.\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-13.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-14.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eMother and father are living in poverty\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eIn recent years, after Kiki’s school social worker learned about her family's financial situation, she referred her to apply for a subsidy and hired workers to help take care of Kiki. Her mother could take time to work outside to help support the family, which is also a breath of relief. But for bathing, cleaning and other hygiene-related care, her mother will never rely on others to prevent infection.; In addition, she has to take care of her two young sons, and sometimes take Kiki to the hospital at night, where she only has almost three or four hours of sleep a day.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eThree years ago, Kiki's mother finally couldn't bear her husband's repeated gambling habits and decided to divorce him. She took on the role of both mother and father and relied on a monthly salary of more than 10,000 yuan to support her family of four, making life very difficult. Once a wheelchair needs to be repaired or replaced, a standing wheelchair or an air mattress is needed to reduce the pressure on the lower body and form pressure sores... it often costs more than 10,000 yuan, which she cannot afford. The independent and sensible Kiki secretly contacted Lifewire, hoping to share the stress her mother carries.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003eLife is an adventure\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eFacing challenges in real life and putting her health in danger time and time again, Kiki and her mother find ways to overcome the difficulties. Perhaps the biggest adventure scene is not in Egypt nor the pyramids – but life, life is an adventure.\u003cspan style=\"font-size: 0.875rem;\"\u003e\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-16.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-17.jpg?v=1773992524\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003ePartial medical supplies costs\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eSemi-automatic standing wheelchair\u003c\/span\u003e \u0026nbsp; \u0026nbsp; $18,000\u003cbr\u003e\u003cspan\u003eManual wheelchair\u003c\/span\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;$7,800\u003cbr\u003e\u003cspan\u003eReplace wheelchair front wheel repair\u003c\/span\u003e \u0026nbsp; \u0026nbsp; $6,000\u003cbr\u003e\u003cspan\u003eReplacement of electric wheelchair battery\u003c\/span\u003e \u0026nbsp; \u0026nbsp; $6,800\u003cbr\u003e\u003cspan\u003eStress Relief Mattress\u003c\/span\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;$4,200\u003cbr\u003e\u003cspan\u003eInflatable seat cushion\u003c\/span\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;$3,800\u003c\/h3\u003e\n\u003ch4\u003e\u003cbr\u003e\u003cspan\u003eReported and written by: Carina、陳偉麒\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eEditors：陳偉麒、梁劍紅\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePhotography：Sea.Pho.Yea、Ken Mok\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eVideo Production：Lifewire、Ken Mok、Sea.Pho.Yea\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Kiki","offer_id":43243479236726,"sku":null,"price":370.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3629-00.jpg?v=1773992475"},{"product_id":"肌萎少女-謝踔柔","title":"肌萎少女 - 謝踔柔","description":"\u003ch4\u003e全身只有數隻手指頭可郁動的YY，靈活腦袋常爆出令人哭笑不得、啟發性的答案。她一歲證實患病噩耗後，父母曾擔心怎樣幫助女兒走她的人生路；但一路走來，原來是女兒在帶領父母一步一步走出路來。\u003c\/h4\u003e\n\u003ch4\u003e「好多細路仔係走嚟走去畀好多歡樂你，但YY係用個腦嚟畀好多歡樂你。」媽媽說。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-01.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-02.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e全身僅三指有力\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e身型單薄、全身僅右手三指有力、左手手指輕微郁動的謝踔柔 (YY，16歲)，在輪椅上聽着媽媽接受訪問，時而眼仔碌碌、時而斜睨着媽媽，「佢成日用眼神表達，佢哋SMA用面部表情、眼神已經表達晒佢哋個心想講咩。」\u003c\/h4\u003e\n\u003ch4\u003e惟看不出的是，YY看似脆弱，實則內心強大，脊髓肌肉萎縮症總把患者困在輪椅上？她偏要打破束縛，反把輪椅變成雙腿，去看這個世界。\u003c\/h4\u003e\n\u003ch4\u003e媽媽說，YY初生時和一般嬰兒無異，直至四個多月大時開始翻不了身。她起初以為只是發展遲緩，但到九個月大時，YY仍然坐不穩，媽媽心知不妙，四出求醫。「有醫生話照咗個腦先。照完磁力共振後，同我哋講話個腦無事，嗰日真係好開心。」正當以為鬆一口氣，怎料醫院報告卻傳來更嚴重的噩耗，「剛好是她一歲生日那天出報告，確定是脊髓肌肉萎縮症二型。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-03.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-04.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-05.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-06.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e茫然不知前路何方\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e確診前憂慮，確診後崩潰，「當時完全冇晒希望，條路都唔知點行，又唔知點幫阿女行呢條路，聽都未聽過呢種病。」急病亂醫，有人推薦這個神醫好、那個針灸有效，當時全都相信，不假思索便會馬上去，「啲人話拜完神就沒事了、改了名就沒事了、契咗邊個觀音又沒事了，都信㗎」，「嗰陣時黐咗線，因為未接受到呢個事實，個人都亂晒。」\u003c\/h4\u003e\n\u003ch4\u003e她也怨過哭過，「700幾萬人入面淨係得60幾個有呢種病，六合彩又唔見我中。」不想面對女兒的病情，媽媽一度用工作麻醉自己。但女兒的成長進步、不斷的技能解鎖、每一個驚喜感動，令爸媽重新認識自己的女兒。「自從佢升上一年級，我發覺：原來唔係咁差噃，原來YY做甚麼都可以。」\u003c\/h4\u003e\n\u003ch4\u003e「佢初初學電動輪椅，原來佢揸車可以揸得咁好」，「佢一年級喺學校參加硬地滾球，出去比賽又攞第二名。」YY更在畫畫展現藝術天賦，媽媽驚訝她憑幾隻手指就可以創作出手掌大小的作品，更有畫作被挑選送到美國參賽，入圍展出。\u003c\/h4\u003e\n\u003ch4\u003e「原來上天剝奪佢一啲嘢，但又會畀返其他能力佢。(患病)事實已經擺在眼前，睇吓你自己想點行。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-07.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-08.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-09.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-10.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-11.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-12.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e兩歷生死「點醒」父母\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e但無論想怎樣行，健康問題都是頭上懸劍。脊髓肌肉萎縮症影響患者的肺和呼吸功能，小如吃飯大至肺炎都可能讓他們置身鬼門關，出入醫院是家常便飯，YY更曾因為肺炎要倚賴呼吸機兩個多月，徘徊生死邊緣。\u003c\/h4\u003e\n\u003ch4\u003e小學一、二年級時，她又曾因為肺部問題影響無法進食，醫生表示要開胃造口。「唔做(手術)又死，做又死。佢四肢已經郁唔到，唔想佢連食嘢嘅能力都無埋。」\u003c\/h4\u003e\n\u003ch4\u003e爸爸媽媽站在命運的十字路口，YY一句「Daddy，當我食唔到嗰時，你再同我做喇。」一言驚醒夢中人----還沒到最差的情況，「食唔到時才算」。慶幸YY的吞嚥能力逐漸恢復，最終不需做胃造口。她如一盞明燈，不僅照亮了自己的方向，也引領父母的前路。\u003c\/h4\u003e\n\u003ch4\u003e抗病之路不平坦，但YY和媽媽相信這一定不是死路。隨著成長，YY需要面對脊髓肌肉萎縮症患者的其中一個大風險手術----脊椎手術。\u003c\/h4\u003e\n\u003ch4\u003e「其實邊有父母想推小朋友入個手術室，根本唔想推佢入去。」但因肺部受壓，阻礙呼吸，而且隨着成長，脊椎會變得越來越硬，風險更高，結果在13歲那年，還是躲不過這8 小時的手術。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-13.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-14.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-15.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-16.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不一樣的童年 不一樣的歡樂\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eYY只記得手術後兩個多月裏都非常的痛。「YY係有啲情緒嘅，見到佢唔開心，又唔講出來。嗰時我哋都好擔心。」媽媽看在眼裏痛入心坎，適逢疫情，醫院只准一人留下陪伴，雖然已有傭工姊姊通宵在旁，但YY也禁不住看着媽媽說「媽咪你可唔可以留低？」，媽媽於是「屈蛇」牽着YY的手安撫，母女度過溫馨的一晚。\u003c\/h4\u003e\n\u003ch4\u003e「有咩？」在旁的YY禁不住插嘴，「有呀！」媽媽神氣秒回。採訪時，大部份時間都是媽媽在說，YY偶爾補充，「點解好似淨係訪問我咁嘅？你講吓好喎！」母女倆如歡喜寃家一唱一和；「你講得好幾好吖，繼續。」YY以時下年青人常說的「厭世模式」回應，惹得媽媽沒好氣大笑。\u003c\/h4\u003e\n\u003ch4\u003e「佢哋SMA啲人腦袋好聰明，唔簡單，諗嘢快過我哋。」這個家中開心果還不時與母親鬥嘴。「一二年級教佢功課，教極唔識，我好忟，想攞衫架(打)，跟住佢話『你冷靜啲先』，跟住我就笑咗出來，佢咁就無事。」\u003c\/h4\u003e\n\u003ch4\u003e「佢依家成日話我好煩，」媽媽說，「我擔心佢出街危險，但佢覺得自己有能力，佢不嬲都好有自信心，仲反問我：『你唔信你個囡呀？』」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-17.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-18.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-19.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-20.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e輪椅無礙追星尋夢\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e媽媽學習放手讓女兒長大，讓她與朋友逛街吃飯看電影，自己上網找資料安排節目。作為「賦二代」的YY，還與志同道合的輪椅朋友追星、去看MC張天賦演唱會、街頭演出。疼錫她的爸爸都會盡量管接管送，到附近等候；媽媽上網留意現場情況，守護女兒。媽媽看著YY說道：「最緊要係佢開心」。\u003c\/h4\u003e\n\u003ch4\u003e笑言自己最愛「吃喝玩樂」的YY，頭腦清晰有主見，好像小時候參加硬地滾球賽，也是進入決賽後才讓父母知道。除了和不少少女一樣喜歡動漫打機、看YouTube，足不出戶看盡全球風光外，原本一直自學畫畫的她，更因為很欣賞IG一位老師的作品，於是自行聯絡對方學畫，家裡隨處可見其作品。\u003c\/h4\u003e\n\u003ch4\u003e用水彩勾勒出海岸旁的燈塔，卻是YY從未到過的風景，「可以消磨時間，因為你一畫就唔知畫幾耐，可能個幾兩個鐘三個鐘。」深知囡囡脾氣的媽媽，一直讓YY自己選擇，「我哋冇逼過佢做任何一樣嘢。」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-21.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-22.jpg?v=1773996227\" alt=\"\"\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「慣咗喇，唔使理佢哋」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eYY從小便很有自己想法，縱然身體被困於輪椅上，但心扉卻一直敞開。媽媽記得YY小時候，常被街上小朋友投以異樣目光，或許同情或許好奇，但YY不以為忤「慣咗喇，唔使理佢哋」。也遇過年長途人問「咁大個仲坐輪椅，唔識行啊？」YY和媽媽唯有無奈一笑。\u003c\/h4\u003e\n\u003ch4\u003e「細個諗過，我哋呢啲有病嘅，好難同正常人交朋友，就算真係交到又係咪真心？可能係表面hea你就算」，「你要交朋友，你都唔會揀一個坐輪椅嘅去交，佢要人幫、永遠照顧唔到自己喎。」\u003c\/h4\u003e\n\u003ch4\u003e但對她而言，輪椅就是身體一部份，與媽媽討論着午餐吃甚麼時，她會搖着控制桿，輪椅左右擺動「踱步」；訪問進行得久了，她讓輪椅升高降低，改變身體姿勢。終於可以到大廈平台鬆弛一下時，YY便控制着輪椅「舒展筋骨」，時而繞圈、時而直路「急步」，要媽媽在後邊追着提醒：「YY唔好咁快呀，小心撞到人呀。」一鼓作氣、沒有猶豫地前進，也許YY很清楚自己的方向。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-24.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-25.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e輪椅16萬  百上加斤\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eYY的自由全靠這部用了十多年、按她的健康狀況改裝的輕觸式操控電動輪椅，每次維修要耗費數千至幾萬，但有些零件已不再推出，日後將修無可修。新的電動輪椅連改裝要16萬港元，加上爸爸的二手車生意近年暴跌8、9成，即使媽媽全職工作，購置輪椅也是龐大開支。\u003c\/h4\u003e\n\u003ch4\u003e加上每年原價160萬的脊髓肌肉萎縮症藥費，即使獲政府資助後藥費也數以萬元計、家中的抽痰機、呼吸機、每月四次的物理治療費和保健品支出，令家庭負擔百上加斤。\u003c\/h4\u003e\n\u003ch4\u003e路是難走，但媽媽感恩沿途很多人幫忙。「每個人條路都唔同，習慣咗點樣照顧佢，係比照顧平時啲小朋友辛苦啲。但反過嚟睇返，現在啲家長好似虎媽咁，我就無呢啲壓力，我只要求佢身體健康就已經好開心。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-26.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-27.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e珍惜當下 過好每刻\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e人們總是望著未知的前路，忽略當下的美好，YY的出現改變了父母：不再執着控制規劃未來，見步行步，過好現在的生活，或許當下就是最幸福的時刻。\u003c\/h4\u003e\n\u003ch4\u003e輪椅向前駛動，逆風將頭髮吹起，就像飛翔中的趐膀，一雙以自信堅強和父母的愛編織而成的翅膀。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-28.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-29.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-30.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-31.jpg?v=1773996227\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪、撰文：周子穎、陳偉麒、梁劍紅 \u003cbr\u003e編審：陳偉麒、梁劍紅 \u003cbr\u003e攝影：Ken Mok、Sea.Pho.Yea \u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"謝踔柔","offer_id":43243479105654,"sku":null,"price":360.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3630-00.png?v=1773994845"},{"product_id":"罕病男孩-林博言","title":"罕病男孩 - 林博言","description":"\u003ch4\u003e「下一站係咩呀？」「下一站朗屏，跟著天水圍、兆康……」\u003cbr\u003e在西鐵車廂中，11歲的博言頭也不抬，逐一讀出腦海中的車站，他早已把路線背得滾瓜爛熟，全因獨力照顧患有罕見病RSTS魯賓斯坦泰比症兒子的林媽媽，希望1900度近視，幾近失明的兒子做好準備，迎接未來：「就算佢將來睇唔到嘢唔緊要，只要記得晒車站，都可以自己周圍去。」\u003cbr\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-01.jpg?v=1774230637\"\u003e\n\u003c\/h4\u003e\n\u003ch4\u003e訪問的這一天，剛扭傷了腰的林媽媽忍着痛楚，由屯門家中到港島薄扶林道心光恩望學校接博言放學，然後搭巴士、西鐵、輕鐵，趕到屯門眼科中心覆診，幾經奔波，直到黃昏才乘車返家。雖然每周都要長途跋涉到宿舍接送博言，但為了讓兒子盡早學習點字、彈琴，適應將來可能面對的失明生活，林媽媽也寧願安排博言從老遠從屯門區內的特殊學校轉到心光恩望。\u003c\/h4\u003e\n\u003ch4\u003e「等佢培養一個(彈琴)興趣，就算將來 touchwood 大吉利是真係睇唔到嘢，如果佢彈琴彈得好叻，都可以憑著一技之長教琴，或者憑聲音去tune琴。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e甫出生無法吞嚥、患青光眼\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「我係林博言，我今年11歲，我有病囉…R..R..S..STS」架着厚厚眼鏡的博言晃着頭、水汪汪的雙眼向着天花板，在媽媽的提示下，逐字說出自己患有的罕見病名。細臉、眼縫向下、鷹勾鼻，博言像是一直在瞇眼微笑，這些是罕見病魯賓斯坦泰比症 RSTS 的特徵之一。\u003cbr\u003e「佢一出世唔識吞嘢，要插鼻喉輸奶，留院差唔多一個月才出院」，出院後，林媽媽更覺得他雙眼有不妥，「一見光就瞇埋，好怕光，唔識對焦，又好少喊。」雖然母嬰健康院護士認為是這位新手媽媽太緊張，但她相信自己的觀察，四出求醫，經轉介到政府眼科，但排期需時。\u003c\/h4\u003e\n\u003ch4\u003e碰巧博言打疫苗後發燒，別人眼中是雪上加霜，林媽媽則把握機會帶博言到瑪麗醫院急症室求診兼全身檢查，赫然發現博言患上青光眼，眼壓隨時壓壞視覺神經。醫生為博言進行手術，並懷疑病情是由基因病引起，輾轉轉介他到遺傳科抽血送到美國化驗。博言18個月大時，證實第16條染色體出錯，患有魯賓斯坦泰比症，是香港有紀錄以來第41例。\u003c\/h4\u003e\n\u003ch4\u003e魯賓斯坦泰比症患者的拇指與拇趾寬大，所以又稱為「大拇趾症候群」。患者會出現智力障礙、生長遲緩、心肺骨骼異常、隱睪症、癲癇、身材矮小、肌張力過弱等等，還有較大機率出現腫瘤、淋巴瘤或白血病病變。\u003c\/h4\u003e\n\u003ch4\u003e「佢依家十一二歲，但身型好似七八歲嘅小朋友咁。」林媽媽說，不少患者因為心肺功能缺陷，年幼時便離世。「呢啲罕有病冇藥食、冇嘢醫，惟有做手術針對性治療，即係頭暈醫頭、腳痛醫腳。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-03.jpg?v=1774230636\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-04.jpg?v=1774230636\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「轉重輕受」 天道酬勤\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e博言一度出現血管肥大，需要做心臟手術，但卻碰巧出水痘要延期，期間血管竟然回復正常，不用做手術，只是他抓損水痘在胸口留下兩道疤痕。 「我成日唸經畀佢，就算要受苦受難，都畀佢受得輕啲，唔好咁辛苦。可能真係『轉重輕受』，受咗呢兩撻疤痕。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e與前夫離異 死胡同中找出路\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e博言三個月大便開始經常出入手術室，直至訪問前已經做了9個大大小小的手術，除了多次治療青光眼外，髖關節等全身位置都留下刀痕。「一次又一次咁見佢喺手術室出嚟，你個人係會好擔心亦都會好灰。」\u003c\/h4\u003e\n\u003ch4\u003e博言爸爸承受不了壓力，在博言還在襁褓時便選擇離開。「佢(前夫)覺得存活率都唔高，你嘥咁多錢去醫佢做咩呢。我覺得佢諗得太灰，醫生有責任講手術風險，佢聽咗入晒腦。但當你帶住小朋友一路成長，見證住佢其實可以跨過困難同障礙。」\u003c\/h4\u003e\n\u003ch4\u003e離婚的打擊，令博言媽媽一度陷入抑鬱。「我本來跳咗fuse熄晒燈，但我爸爸同我講：如果我唔堅強，博言只會『死路一條』！」令她醒覺自己是兒子唯一依靠；兒子也成為她跳出低落的動力。現在的她對前夫沒有怨言，反而多謝他帶來博言，也感謝他使自己變得更堅強。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-02.png?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-05.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e媽媽巧思 逐一克服障礙\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e博言看不清，但走路可比成年人快。與 Lifewire 團隊下巴士後，媽媽雙手忙着把錢包放好，看不清方向的博言便站在原地晃着身子；只消媽媽一牽起他的手，他便安心地向着媽媽帶領的方向衝，瞬眼間便拋離Lifewire團隊，沿途要媽媽拉着減速：「博言！唔好行咁快，媽媽之前整親條腰好痛呀。」\u003c\/h4\u003e\n\u003ch4\u003e博言能夠健步如飛，打破「存活率都唔高」的宿命，全賴媽媽的好學：睇書、上網、問人、「度橋」，努力要把一線光帶進兒子逐漸暗下來的世界。\u003c\/h4\u003e\n\u003ch4\u003e博言小時候肺弱，呼吸會發出「he he hea hea」的異響，媽媽便與他玩吹波波遊戲，鍛鍊肺活量。\u003c\/h4\u003e\n\u003ch4\u003e博言口水也不懂吞，媽媽便買 T 字棒牙膠給他咬，鍛鍊口部肌肉；天天跟他練習協調肌肉和賁門數小時，令他四、五歲時終於可自行進食，不用插胃喉。\u003c\/h4\u003e\n\u003ch4\u003eRSTS 的孩子肌張力過弱，她便讓博言舉水樽鍛鍊肌肉；又中西醫合璧，帶博言針灸耳穴、拉筋按摩，改善健康。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none; height: 834px;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 416px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-06.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 418px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 418px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-07.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e從口吃到小司儀\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eRSTS 患者的平均智商約 36-51，博言雖被診斷為中度智障，但媽媽堅信他只是測試時表現不佳影響評分，決心用努力推翻測試結果。「佢當初連 ABCD 發音都唔得，而家學校訓練佢做小司儀！」開朗的博言，不時主動與 Lifewire 團隊傾偈，又表演唱歌。每周720元一節的言語治療很重要，但母親每天的耐心練習更關鍵。「個言語治療師都話：『你落幾多心機訓練個仔吞口水、吞嘢食，我哋都睇到。』」\u003c\/h4\u003e\n\u003ch4\u003e他不單令看着他長大的醫生跌破眼鏡，有醫生直言他是個奇蹟。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-08.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-09.png?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e1900度近視僅看見光線影像\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e但母子的努力卻阻止不了青光眼的惡化，雖然不斷做手術替雙眼減壓，但博言的視線範圍由正常人看到的16：9影像，不斷縮窄，最終將會全失明。現時1,900度近視的他，只看到光線和外型，但無阻他對世界的好奇。午膳時，四處抓抓亂碰，結果碰瀉了水，被媽媽責備後低頭道歉，攬住媽媽說：「下次唔敢喇媽咪原諒我啦。」林媽媽笑言「聽到佢氹返你都冧晒，咩火都冇晒啦！」\u003c\/h4\u003e\n\u003ch4\u003e又有一次，在一個為博言預備接受手術的打氣大會上，他摟着媽媽唱「世上只有」、「愛是不保留」；又說：「媽媽I Love You」，兩母子從不吝嗇把愛宣之於口，媽媽感觸說出心底話：「媽媽只想你健康」，團隊看得眼濕濕。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e歧視目光最委屈 化為堅強動力\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e博言令她笑，但旁人的歧視令她氣憤不甘，林媽媽憶起最委屈的一次時更眼泛淚光。小時候的博言有過度活躍症，有一次躺在港鐵地上不肯起來，其他乘客在旁指指點點責怪，「你越話佢(博言)，佢越除襪除鞋扔你，又話『關你咩事呀』。」後來更想脫下衣服。\u003c\/h4\u003e\n\u003ch4\u003e「我制止佢，話除衫呢樣嘢我知道你可以控制，唔可以咁樣！」她著博言心裏慢數十下，幻想周遭的是小鳥聲，讓心境平靜下來。「細路仔要畀佢思考，自己領悟出嚟嘅道理，好過你鬧佢鬧出嚟。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-11.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-12.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e好動過人 以耐性應對\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e不斷閱讀心理學書籍，摸索教導博言方法的林媽媽，認為要改掉博言隨地坐的最佳方法，是讓他反思為何要坐在污糟的地方，又會帶他到沙灘、公園等適合的地方坐到飽。\u003c\/h4\u003e\n\u003ch4\u003e對於旁人對過度活躍兒童家長「不懂管教」的指控，她反駁：「醫生都控制唔到嘅嘢，難道我一個媽咪可以講一句說話就令到佢唔大叫？如果你做到，我請你飲茶添呀！」旁人不明白，其實父母比他們更渴望小朋友「聽話」。\u003c\/h4\u003e\n\u003ch4\u003e「每次旁人的冷言冷語，都係誤會小朋友曳。」她形容這些孩子就像一個琴，若然能調好音，一樣可以發出動人的樂聲。「佢自己都控制唔到手腳郁動，連醫生都控制唔到嘅嘢，點解我哋要睇小佢呢？」\u003c\/h4\u003e\n\u003ch4\u003e「我好得意㗎，你越歧視我，我越覺得你係鼓勵我，叫我堅強！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-13.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-14.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e給其他罕病家庭的話\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e言語治療、物理治療、針灸……母子的生活費和醫療開支，僅靠傷殘津貼和媽媽任售貨員的收入支撐。博言因疫情而提前放暑假的日子，媽媽要全職照顧，收入頓減。「20蚊嘅豬肉、一斤菜12蚊，分兩餐食呀！」儘管如此，她堅持不領綜援，希望能自力更生。接受我們訪問時，也說會將部份善款捐給協助身心障礙人士及家屬的慈善團體「青草音符」，希望幫助更多有需要人士。\u003c\/h4\u003e\n\u003ch4\u003e「希望所有有罕見病小朋友嘅父母都能堅強！」，「我想講畀啲罕見病或其他病童嘅父母聽，你一旦放棄，個小朋友會每況愈下；當你正面，吸引力法則就吸返去正面，向住正途走。」\u003c\/h4\u003e\n\u003ch4\u003e兒子甫出生便在瑪麗、大口環根德公爵夫人兒童醫院留醫三年，她親眼目睹不少例子，同房不少病童的父母選擇放棄孩子，「佢哋簽張紙就交畀社署，我見社署職員每次嚟都只係循例檢查：『護士佢有咩發生呢排』。講完之後，冇任何愛嘅表現就走咗。冇話好似媽咪攬下錫下佢呀、同佢梳下頭髮呀。所以我覺得社署同媽咪絕對有分別囉。」\u003c\/h4\u003e\n\u003ch4\u003e「我見到啲離世嘅小朋友，好多都係交畀社署之後每況愈下、過身㗎。」「你探佢(小朋友)多啲佢知道嘅，其實有愛，小朋友就會有好嘅表現畀返你。」\u003c\/h4\u003e\n\u003ch4\u003e她認為博言絕不是負累，在悉心教導和愛護下，自理能力有顯著進步，最近還積極學習音樂，希望能找到出路。\u003c\/h4\u003e\n\u003ch4\u003e「其實問題天天都多，不過我覺得解決嘅方法更多。當你積極面對，身邊嘅人同上天睇到你嘅努力，一定會畀條好嘅路你行！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-10.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-15.jpg?v=1774230637\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪及撰文：蕭愷智、陳偉麒\u003cbr\u003e編審：陳偉麒、梁劍紅\u003cbr\u003e攝影：林栢鈞\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"林博言","offer_id":43243480285302,"sku":null,"price":350.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3626-00.png?v=1774230596"},{"product_id":"拇指姑娘-羅紫羽","title":"拇指姑娘 - 羅紫羽","description":"\u003ch4\u003e安徒生童話裏的「拇指姑娘」精靈小巧；\u003cbr\u003e有人用來形容發育遲緩，身形嬌小的罕見病羅素西弗氏症患者；\u003cbr\u003e但現實生活裏，他們還要面對長短手腳、脊柱側彎、餵食困難……\u003cbr\u003e就像紫羽便要天天注射生長激素，面對副作用…… 直至成年；\u003cbr\u003e媽媽落淚：「能夠維持佢(紫羽)正常營養，正常生長已經好開心。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-01.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-17.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e先天發育遲緩  母費煞思量餵食\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eLifewire 團隊甫踏進紫羽家中，就看見她鼓着腮坐在沙發上，枱上放著媽媽煮好的午飯，她卻不感興趣，媽媽大感頭痛。唸小三的羅紫羽(8歲)，看上如6歲般的小孩。「我睇返姐姐（紫羽）BB時嘅生長曲線，我好感慨，點解佢喐都唔喐呢？」媽媽一邊為紫羽沖營養奶，一邊慨嘆。她比較紫羽和弟弟(2歲)嬰兒時的發育數據，發現紫羽花了一個月才追近弟弟一星期的生長幅度。\u003c\/h4\u003e\n\u003ch4\u003e「身材矮小、發育遲緩、四肢左右不對稱、脊柱側彎、餵食困難……」羅素西弗氏症這個病名，以兩位發現並公佈的醫生名字命名。約六成患者因染色體基因異常導致發病，四成患者病因不明。外人對紫羽的病不了解，總以為是她揀飲擇食，殊不知是此病症狀，患者容易便秘和欠缺食慾。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-02.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-03.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e病例少 斷症難 延誤治療\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e紫羽出生時只有2.155公斤重，媽媽見她身形細小，帶她到營養科和兒科求診，醫生也找不出問題，只能不斷寫轉介信和等候排期。徬徨間，經朋友介紹一名廣州的兒科博士，花近5千元驗血，才發現紫羽患上發病率僅3萬至10萬分之一的羅素西弗氏症。\u003c\/h4\u003e\n\u003ch4\u003e其實赴粵求診前，紫羽已經就此症做過檢查，但未有驗出。直至回港後排期，終於等到醫生再安排檢驗，足足拖延了逾一年，媽媽形容過程漫長，「其實我見到有啲同路人，小朋友兩三歲已經開始行動（治療）。」「紫羽四歲才開始治療，我已經遲呀，所以我嗰時都介懷點解可以拖咁耐，一年時間，小朋友成長差好遠。」訪問後大半年，紫羽身高仍然比「中文大學1993年生長調查」9歲女孩中位數的132厘米矮13厘米。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-04.jpg?v=1774233828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-15.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e病情發展難料  藥費成無底深潭\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e媽媽現時全職照顧紫羽和弟弟，除了花心機照料二人飲食，還要不時帶紫羽覆診。接受訪問的一個月，紫羽已覆診三次，包括治療專注力不足、骨科和內分泌科；除了用藥物提昇專注力，骨科醫生會定期檢測骨骼生長，一旦發現長短手等情況，能及時治療。\u003c\/h4\u003e\n\u003ch4\u003e紫羽同時需要每日注射生長激素，劑量由內分泌科決定，以改善身形比例、活動機能、胃口和減低低血糖症等風險。「頭痛、腳痛呀，之前打(針)都試過呢啲（副作用），跟住將劑量減少一段時間，再慢慢加返。」除了即時出現的副作用，長期注射生長激素，身體也可能會出現中樞性早熟及對胰島素產生抗性。\u003c\/h4\u003e\n\u003ch4\u003e「其實呢種病點解係罕見病，係連醫生都估計唔到佢慢慢生長會發生咩事……」媽媽指生長激素的注射劑量，會隨紫羽年紀增加，費用也越來越龐大：以前每月三千多元，現時已增至近五千元，猶如無底深潭。媽媽說，生長激素要維持注射至紫羽成年、停止發育為止。「呢種病已經係一世，真係唔敢諗日後係點呀……」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-05.jpg?v=1774233828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-06.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e經濟拮据  N無家庭難受助\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e於基層家庭成長的紫羽，一家生計依仗在酒樓工作的爸爸。家中最大支出除了租金，便是紫羽的藥費和奶粉、益生菌等營養補充品：「平時佢食得好少，我都諗盡辦法，點解要補奶粉就係想喺流質都補返啲（營養）。其實營養師都話唔好停㗎！」她曾向其他慈善團體求助，但食物銀行的政策難以惠及罕見病患者，所以結果也只能自掏腰包購買。\u003c\/h4\u003e\n\u003ch4\u003e「如果有錢，我梗係想買好啲畀佢(紫羽)食，吸收好啲。但依家呢啲普通奶粉都要百幾蚊罐，如果靚嗰啲要三四百蚊一罐，一個月要用四罐。」媽媽不住哽咽，加上幼子的奶粉、尿片支出，家中根本難以負擔「靚」奶粉。\u003c\/h4\u003e\n\u003ch4\u003e「我好想佢吸收幾多得幾多，因為佢越唔食嘢，身體機能就越嚟越差，慢慢會產生好多病變出嚟。我上網見有啲小朋友胃口差，吸收唔到營養，壽命就開始短。我越睇得多就越驚。」\u003c\/h4\u003e\n\u003ch4\u003e紫羽一家2022年初由深水埗劏房，搬到由非牟利團體興建的過渡性房屋，輪候公屋。雖然租金比劏房略高，但媽媽坦言，舊居品流複雜、樓下有人吸毒、梯間有針筒。而且紫羽的病情，需要多運動，但在劏房裏，連轉身的空間也沒有，現在至少能給予一對子女較佳的成長環境。\u003c\/h4\u003e\n\u003ch4\u003e以為搬離惡劣環境，能大大改善生活，豈料當刻卻遇上第五波疫情，防疫政策重創飲食業，爸爸失業兼被欠薪，手停口停，媽媽大感無奈：「嗰間嘢都執咗笠，點會畀到你呀！佢直情話你自己去（勞工處）備案啦，佢都唔驚你！」她曾考慮申請綜援，但又不想坐着等政府打救，而且計算過一家加上紫羽的醫療開支，綜援根本不足以應付，所以爸爸還是拼命搵工。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-07.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-08.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e照顧者壓力大  旁人難明瞭\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「佢唔係一兩個月，而係長期病，所以支出好大。」受訪期間，媽媽不時激動落淚。爸爸一日工作11小時，一星期只有一日假期，所有家務都由她獨力承擔，即使爸爸放假，也要爭取時間休息。她坦言，爸爸失業期間，一家壓力大增，夫婦經常出現磨擦。\u003c\/h4\u003e\n\u003ch4\u003e「其實我都好想佢(爸爸)多啲時間陪小朋友，但難啲。」被生活壓力壓得透不過氣來，想一家外出吃頓飯、看齣戲，喘口氣，談何容易。「我專注力都去晒兩個細路，先生啲時間去晒開工。想一家人多啲時間娛樂，對我哋呢啲家庭好難。」\u003c\/h4\u003e\n\u003ch4\u003e「係咪自己邊方面做錯咗，令到佢有咁樣嘅人生？」媽媽一直內疚，自覺虧欠了女兒。縱使醫生已解釋父母基因沒有問題，但紫羽的病卻是她一直解不開的心結，更患上抑鬱，嚴重時需服藥控制情緒。\u003c\/h4\u003e\n\u003ch4\u003e不過為了讓紫羽日後有人陪伴照應，夫婦於是再添孩子，雖然懷孕時擔心幼子同樣患病，媽媽抑鬱症一度惡化，最終慶幸幼子健康。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-09.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-10.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e怕被標籤路難行  不敢告知\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「其實我唔想佢知道（患病）。」接受Lifewire訪問前，媽媽也曾掙扎應否受訪，因為害怕惹來負面批評，「好嘅聲音當然好啦，但我唔想佢成長過程遇到唔好嘅聲音，令佢一世都有呢種心理壓力。」\u003c\/h4\u003e\n\u003ch4\u003e其實紫羽首日上學，已經因為難以負荷書包的重量，要即向學校反映，安排人手為她揹書包和讓她乘升降機。媽媽坦言，間中也有不知就裏的人，查問為何紫羽沒長高、比弟弟瘦，她也不敢說出女兒患病，害怕她被人標籤，日後的路更難行。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-11.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-12.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e脫貧艱難 只盼健康成長\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我其實好想佢好似正常小朋友健康成長，我做唔到，咪唯有平時做到幾多咪幾多。」羅素西弗氏症其中一個徵狀是學習障礙，影響紫羽在學業上的表現。疫情下改用網上教學，要追趕學習進度難上加難。\u003c\/h4\u003e\n\u003ch4\u003e「普普通通去個補習社都兩千幾蚊，我係做唔到，所以都唔敢諗。」現時所住的過渡性房屋，最長只能住三年，若屆時還未能「上樓」，一家人也只能另作打算。捉襟見肘下，媽媽惟有擠出時間，陪紫羽兩姊弟看圖書，希望有助學業。\u003c\/h4\u003e\n\u003ch4\u003e「一句嘢，要同佢(紫羽)講五六次先至識，你要多啲耐性，但係呢種耐性呢真係…兩個(兩姊弟)搞到我都抖唔到氣。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-13.jpg?v=1774233828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-14.jpg?v=1774233829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e用心聆聽 融化小公主\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e羅素西弗氏症患者往往因為身材纖弱矮小，自我形象低落或自卑，媽媽也指紫羽缺乏自信，在學校也只會跟比較熟稔的同學玩。停課期間，就更難學習與其他孩子相處。\u003c\/h4\u003e\n\u003ch4\u003e訪問期間，紫羽不時與弟弟互相捉弄嬉戲、摟着媽媽撒嬌；慢熱的她，最終放下對 Lifewir e團隊的戒心，主動跟我們玩耍。看見兩姐弟滿屋跑玩波，媽媽說，一般縱使困在家中，也盡量讓紫羽活動一下，無論對她生長或是心理都有好處，「有時播下歌仔，跟住叫佢哋跳，畀佢做下運動。」\u003c\/h4\u003e\n\u003ch4\u003e「佢可以正常生長，同埋正常嘅身體我已經足夠。」媽媽抹着眼淚說。「唔講佢結婚生仔，只希望佢學到一技之長，將來可以自力更生，唔想日後有咩病。我淨係想咁簡單，已經足夠。」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-16.jpg?v=1774233829\" alt=\"\"\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-18.jpg?v=1774233828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪、撰文：蕭愷智、梁劍紅\u003cbr\u003e編審：梁劍紅、陳偉麒\u003cbr\u003e攝影：黃雲燁、Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"羅紫羽","offer_id":43243480219766,"sku":null,"price":340.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3621-00.png?v=1774231984"},{"product_id":"罕見病-x-file-陳嘉敏","title":"罕見病 X File - 陳嘉敏","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】罕見病X File 少女3年間變多重殘障\" src=\"https:\/\/www.youtube.com\/embed\/S6QnYIRTXkY\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「行唔到、睇唔清、全身痛、吞嚥困難……」\u003cbr\u003e「可以退化到點？我係咪隨時會走？！」\u003cbr\u003e「我究竟咩病？」\u003cbr\u003e「邊個話到畀我知？！」\u003c\/h4\u003e\n\u003ch4\u003e陳嘉敏 (Hester) ，近年常在醫療新聞中出現的名字，「3年前因為一個無原因嘅病，令我坐左喺輪椅上面……醫生評為罕見病。」身體機能急速退化，3年間由行動自如的活潑女生，變成了多重殘障人士，「每日起身我仲喺呢個世界，我好感恩！」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e沒有最差 只有更差\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e於單親家庭中成長的嘉敏，媽媽在醫院廚房工作，弟弟智障，妹妹有特殊學習需要(SEN)，作為大家姐，她成了家中經濟支柱之一；中五畢業後她半工讀進修，一直致力服務SEN小朋友6年。\u003c\/h4\u003e\n\u003ch4\u003e「有一日行樓梯突然隻腳拎唔起，慢慢兩隻腳都冇乜力，以為太攰啫，冇留意會有其他問題。」但\u003cbr\u003e原來這只是開始，之後雙手也乏力，還出現吞嚥困難，漸漸眼睛也開始退化，聽力亦不斷減弱。\u003c\/h4\u003e\n\u003ch4\u003e嘉敏「如數家珍」道出退化歷程：\u003cbr\u003e「尾龍骨位痛，影響行路，我係由用士的到四腳架、到手推輪椅到電動輪椅，四個階段……」\u003c\/h4\u003e\n\u003ch4\u003e「我又入院喇」(無限loop)\u003c\/h4\u003e\n\u003ch4\u003e「我又入院喇。」小編跟嘉敏之間的日常，除閒談近況及鼓勵說話，還會收到這句。這專訪還未刊印，這句又出現。「…冇晒…力…控…制…唔到…差咗好多…入院…」無法打字的嘉敏，用僅餘的力氣留言給小編。\u003c\/h4\u003e\n\u003ch4\u003e這趟入院，她顯得氣若游絲，頸不能伸直、手不停震、還帶氣喘。進食時，其頭部不由自主地搖擺，小編需邊按其頭部、邊將食物攪成糊狀，以特製的湯匙才能勉強助她進食。簡單如喝水，小編也需協助加凝固劑，助其吞嚥，否則又會「落錯隔濁親」及氣喘。\u003c\/h4\u003e\n\u003ch4\u003e「今次入院差得多，冇藥可以控制，只能靠做物理治療、職業治療同語言治療...」每次出院，都帶着許多疑問，因總是無法找出原因。「有時身體某地方差咗，就會牽連其他地方都差埋。今次出院痛嘅地方多咗，返學成日坐，好痛，好攞命！暫時用腰封承托住，好少少。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-01.jpg?v=1774236826\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e十次拗柴嘅痛加埋\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e事隔個多月，嘉敏因腰痛不止又入院，「因為歪咗，用唔到力，如盤骨同尾龍骨對上幾節都痛，好似十次拗柴嘅痛加埋一齊，止痛藥已無用，痛到頂唔順惟有去睇急症打止痛針，再睇痛症科，但暫時都冇辦法處理到……」\u003c\/h4\u003e\n\u003ch4\u003e正當小編想像着這痛楚程度時，小妮子竟記掛着安排得密麻麻的行程，要逐一聯絡取消！「上次入院一星期，本來要到上海罕有病交流活動，錯失咗都冇辦法，堂上唔到，都有好多活動要取消……」說着說着，她又禁不住笑了。嘉敏的樂天，確教旁人自愧不如。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e醫學X File 淪為人球\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e然而，多堅強也有被磨蝕之時，「曾經半年至一年收埋自己喺屋企，覆診返嚟，唔想畀人問發生咩事呀、點解咁呀...」事實是，嘉敏也很想知「點解」。她曾向專科醫生求診做檢查，但由於病因不明，使她變成被卸責的人球，直至病情惡化始獲處理，但身體已變得更壞。醫生只能將她的病因歸類為退化疾病，而且不只一種，身體各部份都逐漸退化，醫生們都束手無策。無以名之的病症，成了醫學上的X File。\u003c\/h4\u003e\n\u003ch4\u003e「點解要病人咁辛苦去搵唔同嘅信，去証明自己嘅身體出事？我再行唔到、睇唔到時，點樣去爭取？」最初求診眼科醫生，嘉敏要據理力爭才獲安排做深入測試，結果發現她雙眼正在退化，常面帶笑容的她頓時嚴肅起來：「點會由一個病人爭取檢查呢？！」\u003c\/h4\u003e\n\u003ch4\u003e得不到醫生的診斷書，連治療都無從入手；向政府申請援助，因沒診斷書而不合「資格」；申請其他輔助設施亦困難重重；就算一張輪椅、一張升高降低的枱，甚至一副眼鏡，都需要「過五關斬六將」才能得到。「我真心講句，任何一架輪椅都唔係醫院批畀我！」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e退化的是身體..….及制度\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「每一樣嘢都要我好辛苦求返嚟、每一樣嘢都要我好努力咁爭取返嚟！」這陣子，嘉敏的輪椅爆軚，她希望到醫院申請轉介信，好讓她獲「上門修補輪椅」服務，小編陪她走遍三個部門，最終換來都是一個無奈：「叫我自己去單車鋪換軚！」\u003c\/h4\u003e\n\u003ch4\u003e看着嘉敏由輕鬆漸變激動、再推至絕望的起伏心情，小編在想，一個行動不便的輪椅人士，是如何能扛起那輪椅軚，跨區找單車鋪換軚呢？僵化的是制度？還是人心？\u003c\/h4\u003e\n\u003ch4\u003e教她頻撲的，不僅是退化中的身體。她雙眼畏光兼夜盲症，近視和遠視的度數更不斷時深時淺，連眼科醫生也愛莫能助。但CSSA (綜合社會保障援助計劃) 每兩年只批五百元眼鏡資助費用。她曾試過由粉嶺去港島南區葛亮洪求資助，「我攞完封信佢哋就講：唔好意思，我地唔批畀你！我唔係行啊，大佬，我係碌啊！由粉嶺碌去呀！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-02.jpg?v=1774236827\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e持杖坐輪椅 多重障礙\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我能夠自己幫自己做嘅，就係帶太陽眼鏡保護雙眼。我唔係要型呀！」每次跟嘉敏外出，她都帶備多副眼鏡；因應不同的光度，時而架上太陽眼鏡、時而架上其他近視或遠視眼鏡。\u003c\/h4\u003e\n\u003ch4\u003e面對未知的變數，嘉敏現積極學習盲人點字、定向行走，「拎住支白手杖坐輪椅係一個挑戰，想畀大家認識到多於一種障礙。殘疾人士嘅定義冇、乜嘢叫多重障礙冇、乜嘢叫罕有病都冇…...點解香港咁差？」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「仲喺世界  我好感恩」\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e一切看上不快，嘉敏卻轉化為「得着」，「我分享呢三年嘅經驗畀其他病人，真係幫到手，我都好開心。」她認為過去經驗就算幫不了自己，至少能夠幫到別人，就是她的最大安慰。「上天係公平嘅，攞走咗你嘅視力，或者無咗聽力，但你個心會打開，更感受到身邊嘅事物。」她珍惜現有一切，「每日起身我仲喺呢個世界，令我好感恩，我仲郁得走得嘅時候，就要好好享受。」\u003c\/h4\u003e\n\u003ch4\u003e嘉敏從未放棄找出病因，也沒放棄自己的生命，每天都在挑戰自己；她還不時探訪以前服務的一班有特殊需要小朋友，也積極參與不同的慈善活動，跟罕見病病童到樂園遊玩，她深信，生命可以影響生命，只要不放棄。「所有嘢帶唔走，我能夠留嘅就係我嘅記憶，我畀大家嘅開心回憶囉。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-03.jpg?v=1774236826\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e時間有限  活出無限\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「唔再退化得多已經叫贏！」嘉敏無懼困難處處，仍希望在有限的時間，活出無限的人生。她拋開行動不便的桎梏，堅持達成「海陸空」的夢想，考上輪椅武術黑帶、滑翔傘、潛水，不斷勇於嘗試接受挑戰，永不言敗，藉此鼓勵其他人：「只要將模式改變，傷殘人士都能創造出一片新天地。」\u003c\/h4\u003e\n\u003ch4\u003e嘉敏下一個目標就是「戴四方帽」，完成後將到以前工作的特殊學校實習，為有需要的小朋友義敎。她同時希望出一本書，以日記形式紀錄親身經歷，期望「以生命影響生命」，藉此鼓勵身邊人。\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-04.jpg?v=1774236827\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-05.jpg?v=1774236828\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-06.jpg?v=1774236827\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-07.jpg?v=1774236827\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e她寄語大家：別著眼於失去的，珍惜眼前所擁有！\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e2021年3月更新\u003c\/span\u003e\u003c\/p\u003e\n\u003ch4\u003e不明罕病 陳嘉敏  造口手術防食道退化不明罕病 陳嘉敏  造口手術防食道退化因為不明罕見病，令身體機能日漸退化的陳嘉敏，病情一直反覆無常。Lifewire 考慮嘉敏身體狀況的需要，去年為她購置了增氧機，提高體內含氧量，改善及紓緩呼吸及氣管不順的問題。\u003c\/h4\u003e\n\u003ch4\u003e去年中嘉敏到醫院進行了造口手術，以防即使食道吞咽退化，也能為身體輸送養份。手術順利完成，稍後會再換合適的喉管。嘉敏近期多了疑似抽筋的問題，盼能找到成因及醫治方法。大家齊為嘉敏打氣！\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n  \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_d0298d54-719c-45b6-ae60-b4a0ee04cdb4.jpg?v=1780460171\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n  \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_31d98528-0fc9-4d61-8832-ad04d0e78fbe.jpg?v=1780460171\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n","brand":"Lifewire HK","offers":[{"title":"陳嘉敏","offer_id":43243480121462,"sku":null,"price":330.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3605-00.jpg?v=1774236776"},{"product_id":"結節性硬化症-林卓瑤","title":"結節性硬化症 - 林卓瑤","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/rcfaZocs3ow\" title=\"【#透視罕見病】結節性硬化症（一）滿腦腫瘤 罕病少女以畫回饋社會\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eYou make me cry make me smile\u003cbr\u003eMake me feel the love is true\u003cbr\u003e謝謝你的關顧 與及無償的愛護\u003cbr\u003e年月漫漫 多艱苦 你也永遠優先擔心我喜惡\u003cbr\u003e唯恐我並未得到 最貼身保護 Oh I love you\u003cbr\u003e（《世上只有》節錄）\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e我，學習比人遲緩……\u003cbr\u003e我，總惹來奇異目光……\u003cbr\u003e我，滿腦腫瘤隨時器官衰竭卻表達無從……\u003cbr\u003e然而，我，卻懂以畫作透露鮮為人知的內心世界，用天份回饋社會，你感受到嗎？\u003cbr\u003e我是患上結節性硬化症，但被媽媽視為禮物的林卓瑤（瑤瑤）。\u003c\/h4\u003e\n\u003ch4\u003e「Oh I love you……」19歲的瑤瑤，是位「咪霸」，最愛在家開「個人演唱會」，摟着媽媽Rebecca 一起哼《世上只有》「從我降世 一開始 到永遠不休止……」歌詞彷彿訴說着她倆的故事。\u003c\/h4\u003e\n\u003ch4\u003e瑤瑤不僅患罕見的結節性硬化症，還有自閉症傾向、強迫症，輕度至中度智障。她約5個月大時，某天突全身抽筋，媽媽當時還不以為意；豈料翌日相同時間，瑤瑤又抽筋，「發覺唔正常，即帶佢睇兒科醫生」。\u003c\/h4\u003e\n\u003ch4\u003e緊隨的，是停不了的檢查，由診所到瑪麗醫院，大半年仍查不出病因，但病情卻越見嚴重，「好徬徨好無助！我哋已經睇緊最權威、全港數一數二嘅兒科醫生，但仲未知乜嘢事，抽筋藥對佢冇幫助，抽筋由一日一次、一日兩次，一日三次，一路遞增；但冇嘢幫到！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-01.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-02.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e滿腦腫瘤似西瓜核\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e經過大半年，院方終確診瑤瑤患上結節性硬化症，「好記得教授放MRI（磁力共振）片出嚟睇，好似西瓜咁，啲腫瘤一點點白色佈滿成個頭。嗰時教授話冇乜嘢可以做」。\u003c\/h4\u003e\n\u003ch4\u003e「我好傷心，喊得好淒涼好犀利，問教授『點解冇手術做？』佢話成個頭都係瘤，點可以做到？！香港冇呢個技術，嗰時我覺得好似世界末日。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e赴美國開腦切腫瘤\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「我唔信世界上只得瑤瑤一個係結節性硬化症！」憑着不放棄的信念，Rebecca 鍥而不捨追教授介紹外國醫生，更被拍枱罵：「佢好惡，話我好煩！鬧到我面懵，但教授係唯一嘅希望，唔問你問邊個？！」未幾，教授介紹了一位美國醫生，她隨即帶着當時僅20個月大的瑤瑤赴美做手術。\u003c\/h4\u003e\n\u003ch4\u003e「好幸運，手術好成功，切咗令佢嚴重抽筋嘅腫瘤出嚟。」雖然瑤瑤腦內仍佈滿腫瘤，間中仍會抽筋，但已不像高峯期般一個月抽筋160次，而藥物尚算能控制病情。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-03.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-04.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e滿身抓痕 虐兒疑雲\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(0, 0, 0);\"\u003e困擾 Rebecca 的，除了瑤瑤體內隨時爆發啲腫瘤，還有受強迫症影響下的自毀行徑，「佢自己抓到手、腳、身都係（傷痕）。有次帶佢游水，泳池阿姐問瑤瑤，『妹妹，點解你個身咁多傷痕？』擺明懷疑我虐兒啦！」\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cspan style=\"color: rgb(0, 0, 0);\"\u003e「抓到塊面損晒就呃膠布黐，佢覺得靚、覺得開心。所以有段時間出街好似『阿壽』，成塊面都係膠布。」Rebecca坦言無奈但只能接受，認為這是女兒的成長過程；幸經她苦口婆心的勸告及教導，瑤瑤近年已減少這類行為。\u003c\/span\u003e\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-05.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-06.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e激發天份 回饋社會\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e受病魔纏擾，愛女無法如一般小朋友正常學習，Rebecca另找培養方法，「讀萬卷書不如行萬里路，得閒就帶佢出街或旅行，希望佢親身經歷去學嘢」。Rebecca更安排游泳、彈琴、畫畫、合唱團等課外活動，希望增加瑤瑤生命中的可能性。沒料到，瑤瑤的「小宇宙」一下子被激發出來。\u003c\/h4\u003e\n\u003ch4\u003e「無心插柳柳成蔭！」Rebecca高興又意外，「畫畫原本係想訓練佢坐定一個鐘，但經過老師多年嘅堅持、毅力同包容，宜家佢可以畫到咁靚嘅畫出嚟」。瑤瑤自信心「返晒嚟」，「佢宜家就算對住唔識嘅人，都會同人講瑤瑤畫畫好叻。就算佢智障，都有屬於自己嘅小天地。好開心瑤瑤有呢個天份回饋社會，我真係好開心！」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e選擇接受 扔下包袱\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e回想瑤瑤患病初期，Rebecca 承認忽略了大女兒，「佢嗰陣叫修女為佢祈禱，佢好驚阿妹唔知乜嘢病，又怕人哋知阿妹有病」。直到校方通知，她才如夢初醒，「我同大女講，如果你唔接受阿妹係一個有病嘅小朋友，你點期望人哋會接受你個妹呢？」\u003c\/h4\u003e\n\u003ch4\u003eRebecca 認為只有「接受」，才能放低心理包袱，「可能面皮夠厚，我兩公婆從來冇諗過收埋瑤瑤。如果你怕俾人知，人哋點幫你？呢個係生命裏嘅一樣嘢，你視佢為一個負擔，生活會好辛苦。冇咗呢個心理負擔先會活得開心！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-07.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-08.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e學會忍耐 懂得包容\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e瑤瑤輕度至中度智障，為「虎媽」Rebecca帶來壓力，「我好想啲小朋友好企理，個人又心急，但淨係教佢『粟米』都教咗一年，佢學嘢好似漏斗咁，你入幾多落去，都唔知佢有冇學到1%至5%」。她坦言曾感氣餒，甚至大發雷霆，但後來卻想通了，「有佢先訓練到我嘅耐性、包容性，睇嘢可以用唔同角度」。\u003c\/h4\u003e\n\u003ch4\u003e「我學識欣賞佢，雖然佢學嘢唔叻，但佢唱歌比我好、畫畫又比我好。所以家姐都投訴我，覺得我有兩把尺，點解對佢咁嚴，對妹妹咁包容。」Rebecca坦言，瑤瑤不是她生命中的缺陷，相反，是上天贈她的禮物，成為她生命中的一個訓練，彌補她性格的不足。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e藥費不菲 月逾2萬\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e外國有研究發現，「mTOR抑制劑」可令結節性硬化症患者臉上腫瘤縮小，並有效改善抽筋及認知方面的能力；惟這藥在香港並未納入藥物名冊，每月藥費約2萬港元，無疑為病患家庭添加壓力。\u003c\/h4\u003e\n\u003ch4\u003e「好期待政府盡快（將mTOR抑制劑）納入藥物名冊，否則，腫瘤好似計時炸彈咁，唔知喺邊個器官走出嚟，越生越大會令器官衰竭。」Rebecca形容的，正是瑤瑤將面對的狀況，「瑤瑤快20歲，呢種病去到廿幾歲，腫瘤會激增，到時睇下好唔好彩」。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-09.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-10.jpg?v=1774248213\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e限制太多 政策荒謬\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e醫管局雖期望今年將藥物治療範圍擴大至腎腫瘤，但Rebecca坦言限制太多，「要個腎腫瘤去到3cm，先可處方藥物，仲要去審查。（患者）幾歲嗰時可能得個頭有腫瘤，腎未有，係冇可能得到處方用藥，香港政府呢個政策係比較荒謬，違反『病向淺中醫』嘅諗法」。\u003c\/h4\u003e\n\u003ch4\u003e面對困局，Rebecca 惟有繼續透過不同活動盼獲社會認同、為病友籌錢，希望政府感受到壓力，盡快調整藥物治療範圍。\u003c\/h4\u003e\n\u003ch4\u003e「瑤瑤平時好鍾意講『媽咪，我好錫你』，如果隻藥可以改善到佢，希望佢好清楚表達自己嘅意願！」如此卑微的要求……為結節性硬化症患者出分力，你也能做到！\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cbr\u003e\n\u003ch3 style=\"text-align: center;\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e *     *     *     *     * \u003c\/span\u003e\u003c\/h3\u003e\n\u003ch3\u003e\n\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-11.jpg?v=1774248213\" alt=\"\"\u003e \u003cspan style=\"color: rgb(255, 42, 0);\"\u003eEddie：幫到幾多就幫幾多\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e瑤瑤身患惡疾，但畫功了得，其畫作不但印製成利是封，年初更舉辦了個人畫展，活動的推動者正是前EO2成員彭懷安（Eddie）。\u003c\/h4\u003e\n\u003ch4\u003e結節性硬化症協會與華星冰室合辦「星夢童謠計劃」，更找來Eddie擔任愛心大使，Eddie坦言瑤瑤的畫作令他留下深刻印象，「你睇到佢喺畫裏面表達自己，有時佢好開心，啲花花草草好繽紛；有時佢想講屋企人，就會畫爸爸媽媽。用心去睇嘅時候，我都會被佢嘅畫感動，係我第一次。」\u003c\/h4\u003e\n\u003ch4\u003eEddie 認為幫人是應份，「幫到幾多就幫幾多」。他希望為結節性硬化症協會舉辦更多活動，令更多人認識這種罕見病，「了解多啲、關懷多啲、政府嘅資助多啲，其實每樣嘢多啲啲就夠，希望人傳人一路傳落去」。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：結節性硬化症是甚麼？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e結節性硬化症（Tuberous Sclerosis Complex，簡稱TSC）屬罕見病，部分是遺傳自父母，部分是基因突變所致。患者體內控制細胞生長的蛋白質mTOR失控，細胞過度激生，會在腦、心臟、肺、脾、腎、皮膚等部位形成腫瘤。主要病徵有癲癇、抽筋、器官功能衰竭等，皮膚或會長出纖維瘤硬塊。目前未有方法根治，但可藉「抽筋藥」或「mTOR抑制劑」控制病情。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"林卓瑤","offer_id":43243480776822,"sku":null,"price":320.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3202-00.jpg?v=1774245146"},{"product_id":"母子同病變-黃偉龍","title":"母子同病變 - 黃偉龍","description":"\u003ch4\u003e「Roll機，準備，ACTION！！」\u003cbr\u003e18歲，有着長不大的「童顏」；全因尚未發育，已先退化；\u003cbr\u003e延醫、連番誤診、雙重罕見病，帶來無盡的手術與折磨；\u003cbr\u003e全港第四宗，原來兩母子同患不治症，「最壞打算我就真係唔敢講……」\u003cbr\u003e偶浮出「係咪自己好冇用」念頭，惟更多的是，每天上演的樂天內心小劇場；\u003cbr\u003e若人生是一齣劇本，黃偉龍編導演的喜劇，就是鼓勵着身邊人苦中作樂的藍本。\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e「醫院係一個又無助又多恐怖嘢嘅地方。」冷冰冰的病房，任何人都不嚮往。黃偉龍僅4個月時，已經歷白內障手術，兩歲還要嵌入人工晶體。「Congenital Cataract（先天性白內障）, Hypotonia（肌張力減退）, Pectus Carinatum（雞胸症）……」拿着一份ATAD3A基因突變的病歷資料，淺白的字母，卻拼湊出一堆看得一頭霧水的組合，即使翻譯成中文也不一定看得懂，年紀輕輕的偉龍，卻一直跟這些症狀糾纏與搏鬥。\u003c\/h4\u003e\n\u003ch4\u003e不能久站、不能如常進食，眼前的偉龍身形瘦小，看上如初中生般；但卻愛手舞足蹈，更愛一人扮演不同角色，跟自己做對手戯，演繹內心的小劇場，逗得媽媽及Lifewire團隊大笑不止。不治之症帶來的痛苦，他一直默默承受，從沒埋怨，只積極傳播快樂，成為大家的開心果。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-01.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-02.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e脊彎誤判駝背 母子同患不治症\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e「正常小朋友可能6個月已識轉身，但佢嗰時都未識。」媽媽憶述，偉龍的發育比同齡小孩落後，差不多兩歲才能自己行走，且只能維持很短時間：「可能10分鐘左右佢已經唔可以自己平衡到，一直到而家18歲都長期要扶住佢行。」\u003c\/h4\u003e\n\u003ch4\u003e進出骨科診所、度脊椎弧度、照X光，對偉龍來說是家常便飯。醫院最初診斷他駝背，建議待偉龍成年後為他施手術，但直到2019年，瑪麗醫院遺傳科致電媽媽，指偉龍屬罕見遺傳病ATAD3A，為全港第四宗；經檢查後， 原來媽媽也同樣患此症，只是不同型號，程度相對較輕。得悉噩耗的她才恍然大悟︰「其實唔係駝背，係脊柱側彎。」\u003c\/h4\u003e\n\u003ch4\u003e其實早於偉龍三年級時，醫生就驗出偉龍缺少第九條染色體，導致發育遲緩，「而家都係高得好慢，今年18歲，都係去到150（厘米）。」確診ATAD3A後，醫生提醒，偉龍會提早出現腦退化，等於老人家認知障礙、提早衰老。未完全發育的偉龍，年紀輕輕已像老人家般身體退化。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-03.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-04.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e患吉巴氏綜合症  乏力如斷腳\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e2017年，13歲的偉龍接種流感疫苗出現高燒等症狀，本以為是針後正常反應，媽媽卻察覺到異樣，「嗰次打完，又唔食嘢，行路行到亂晒籠，好似成身都唔係自己嘅，發燒燒到3日都38度幾。」服過退燒藥，症狀仍未減退，媽媽帶偉龍到急症室求診，起初仍被勸退，但她堅持送兒子入院，輾轉經兒科安排抽骨髓，才驗出偉龍患上吉巴氏綜合症。\u003c\/h4\u003e\n\u003ch4\u003e吉巴氏綜合症是罕見的自身免疫疾病，影響周圍神經系統，包括控制手腳活動、身體不同部位的神經都會受影響。媽媽形容，當時的偉龍手腳乏力，走不到幾步路，就跪在地上要人攙扶，「好似隻腳俾人打斷咗咁」。偉龍留醫逾兩個月，其間接受靜脈注射免疫球蛋白，但即使出院後，身體亦未能恢復如初。\u003c\/h4\u003e\n\u003ch4\u003e考慮到偉龍複雜的病歷，媽媽決定於偉龍17歲時，提早為他安排脊柱側彎手術，以支架撐直原本近70弧度的脊椎。術後偉龍於深切治療部觀察，他猶有餘悸：「一擘大眼覺得傷口非常之痛，全身都緊晒完全喐唔到，駁住嘢咁瞓咗喺床度。」慶幸手術尚算順利，訪問當天的偉龍腰板看上挺直了不少，但克服完脊椎手術，又緊接另一個難關。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-06.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-14.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e連番誤診 插鼻胃喉加劇肌肉鬆弛\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「佢由一出世就年年都會有一次肺炎，但醫生就當佢流感嗰啲上呼吸道感染。」偉龍自小已因肺炎而經常出入醫院，卻一直沒找到問題源頭作根治。「2019年後知道呢個病，加上照3D X光片，佢（醫生）同我講肺炎嘅原因唔係因為流感，係佢食嘢『落錯格』，擺咗喺肺度，搞到發霉。」\u003c\/h4\u003e\n\u003ch4\u003e原本之前醫生診斷偉龍的狀況是吞嚥困難，遂為他插了近兩年鼻胃喉。但在瑪麗醫院完成脊椎手術後，較資深的醫生問媽媽，「佢做乜插鼻喉㗎？阿仔唔係吞嚥困難喎，係肌肉鬆弛搞到啲嘢跌咗落個肺。」由於鼻胃喉必須定時更換，重複一拔一插的過程加劇了肌肉鬆弛：「搞到佢而家裏面嗰個葉（賁門）根本都唔識閂埋。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-07.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-08.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e胃造口手術在即 憂再不能行走\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e食道肌肉因兩年間插鼻胃喉而鬆弛，偉龍憶述：「做（脊柱側彎）手術之後頭嗰一兩日都有試過插喉，最終都係唔成功，再喺屯門醫院又試咗幾次，都係唔成功，所以就決定做胃造口手術。」\u003c\/h4\u003e\n\u003ch4\u003e手術的日子逐步逼近，一直嬉皮笑臉的偉龍，秒間眉頭緊皺，深深嘆口氣：「我最希望係個手術唔使做，我唔想影響之後嘅生活。」儘管偉龍經常進出醫院，對胃造口手術都表現出份外擔憂：「講到呢度有啲唔係咁開心，我係有擔心，仲有好多嘅憂慮：日後嘅護理，擔心隨時行唔到要坐輪椅，幻想過自己之後會插呼吸機，亦都擔心媽咪嘅身體。最壞打算我就真係唔敢講……」原本「開籠雀」般的偉龍，頓時沉默起來。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-09.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-10.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e疫情下被邊緣：「政府有冇理過我哋？」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e雖然現時未有數據證明，接種流感疫苗與吉巴氏綜合症存在直接關係，但當時的主診醫生亦曾建議偉龍避免再接種疫苗。但防疫政策下，媽媽也要為偉龍覓出路。她向醫生反映過兒子狀況，嘗試申請疫苗接種豁免書，醫生權衡感染肺炎和吉巴氏症復發的風險，最終決定按照政府指引，只豁免偉龍接種科興疫苗。媽媽也只好硬着頭皮，帶他接種復必泰︰「撞返佢嗰隻菌，佢就真係昏迷都唔知。」\u003c\/h4\u003e\n\u003ch4\u003e疫情導致停課，偉龍形容這兩年的網課是「一塌糊塗」。訪問當天，偉龍仍在放暑假，接下來就是他中學生涯的最後一年︰「好似沙漏咁俾人放大咗嗰個位，放晒啲沙落去，『沙』一聲過得好快。」\u003c\/h4\u003e\n\u003ch4\u003e疫情令各行各業停滯，學生的進度亦然，有特殊需要的孩子就更甚。媽媽不禁控訴︰「而家疫情咁樣，政府有提過一隻字咩？特殊小朋友呢啲要額外理下，我識身邊都係有啲問題嘅，個個傾起上嚟喊到唔知似乜！」她形容，現時的處境就像被政府丟棄在一角，反而坊間一些組織會留意特殊家庭的狀況，除了小朋友，更會關心照顧者的情緒。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-11.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-13.jpg?v=1774251913\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e身體受限 電影展翅夢無限\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e患有過度活躍症的偉龍，縱使身體乏力，但也常坐不定︰「佢有時跑起上嚟自己冇晒控制力，跑到亂晒籠撼落牆。」後來媽媽發現，偉龍在打鼓時能保持專注，便為他尋找導師，希望他可以發揮自己的興趣，更可將平時累積的脾氣轉移發洩：「佢好有耐性去學，學完之後佢自己又會好好記性咁去記返。我同佢講，『有咩脾氣你上堂嗰時大聲啲打落個鼓度，個鼓唔會爛。』」\u003c\/h4\u003e\n\u003ch4\u003e媽媽亦為偉龍接拍電影：「佢之前做《死因無可疑》，做（黃）秋生個仔，嗰套戲冇人夠膽接，要吊『威吔』。」偉龍說起拍電影的過程，嗓門隨即變大，展現出他的熱愛：「我希望會做啲槍手呀、狙擊手嗰啲，好似神探偉龍咁樣，我就自己諗啲劇情出嚟畀自己。」\u003c\/h4\u003e\n\u003ch4\u003e對於偉龍的興趣，不少思想保守的家長都會批評，反而媽媽傾力支持兒子：「以興趣為事業，最緊要你自己，你有嗰個興趣就會緊張嗰個事業。」媽媽認為只要他足夠投入就給他自由，放任他去闖去試。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-05.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-12.jpg?v=1774251915\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e互相扶持 缺點轉化成優點\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e小小年紀拖着漸漸惡化的身體，對偉龍造成了龐大的壓力：「我感受到好多挫折，好多唔開心、唔愉快嘅事情，我真係覺得點解我自己要生存喺呢一度。」他擔心自己胃造口手術後，若要以輪椅代步，甚至用呼吸機維生，會成為媽媽的負累，並曾否定自己：「係咪自己好冇用？」。\u003c\/h4\u003e\n\u003ch4\u003e媽媽看在眼內，除了心痛 ，還得著兒子正面面對：「唔係淨係你哋啲特殊問題，個個都有自己嘅缺點，咁佢諗返自己嘅缺點點樣變為優點。」\u003c\/h4\u003e\n\u003ch4\u003e「好嘅部份佔97%，唔好嘅部份佔0.5%。」偉龍再次以他獨特的方式形容兩母子的關係，媽媽聽得啼笑皆非。情感較為內斂的偉龍，一直拒將愛說出口，惟最後還是禁不住吐真言：「媽咪成日為咗我而嘮氣，我都擔心媽咪嘅身體。盡量做啲野唔好激嬲媽咪。」\u003c\/h4\u003e\n\u003ch4\u003e「我嘅願望係盡量用自己嘅能力去湊好偉龍。」「希望你一直可以照顧我。」談起未來， 二人都沒甚麼宏大願望，只盼能在一起好好生活。說畢，偉龍衝向媽媽「肉緊」地吻她；兩母子的默契，並不重於宣諸於口的感言；一舉一動，表達了一切。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-15.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-16.jpg?v=1774251914\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪、撰文：謝朗晴、蕭愷智、梁劍紅\u003cbr\u003e編審：梁劍紅、蕭愷智\u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e生活照由受訪者提供\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"黃偉龍","offer_id":43243480875126,"sku":null,"price":310.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3623-00.jpg?v=1774251875"},{"product_id":"追夢脊髓肌萎少女-賴君怡","title":"Young Girl with Spinal Muscular Atrophy Chasing Dreams - Kwan Yi Lai","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】追夢脊髓肌萎少女 「就算只剩雙眼，都想生存！」\" src=\"https:\/\/www.youtube.com\/embed\/370XHdarz9g\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eAt 14 years old, she’s completely wheelchair-bound. Her estimated life expectancy? Only 18 years.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e“Everyone needs to face death one day,” she said as a matter of fact.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eOthers around her are disheartened by her story, but this girl thinks she’s lucky. She’s even determined to become an expert in computer game development.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e“I won’t give up until I’ve reached my goal. I still want to remain in this world, even if all I can do is see with my eyes!”\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eThat’s Kwan Yi Lai, who suffers from spinal muscular atrophy.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-01.jpg?v=1774254781\"\u003e Kwan Yi, who was in an electric wheelchair, had to travel through car parks, cargo lifts and narrow back alleys of shopping malls and fight with delivery workers to find a lift that can reach the lobby of the MTR station.\u003c\/h4\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003cdiv class=\"table-col half-col\"\u003e\u003cimg alt=\"\" src=\"https:\/\/www.lifewire.hk\/uploads\/images\/source\/5d50ed7f8b38c1.JPG\"\u003e\u003c\/div\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\u003cspan\u003e“What’s the big deal if I can’t walk? The upper body can do much more than the lower half of the body!” Kwan Yi said cheekily, speaking those words of wisdom, a stark mismatch of her age. With a pair of cute rabbit teeth, Kwan Yi spoke in an orderly manner, her sentences decorated with painting and computer games jargons. This Form 2 student was filled with positive energy.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThe doctor once predicted that she could only live to the age of 18. Her mother recalled those moments when Kwan Yi was around 6 months old. She noticed that Kwan Yi couldn’t sit or turn her body like other babies. The health centre only informed them that it might be due to slower growth development and didn’t follow up or investigate further. As the situation persisted, they finally got a doctor to confirm her diagnosis as spinal muscular atrophy. “It was like being struck by a lightning bolt when I heard the news,” Kwan Yi’s mother recollected.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“It was so difficult to accept! I’ve never imagined it happening. How could it be a genetic disease? Neither of our parents has such a disorder. I was completely devastated. The news didn’t bore well with me. I couldn’t even stand still.” On the one hand, the disease corroded the family’s emotions. On the other hand, the disease substantially weakened Kwan Yi’s muscles, affecting her spinal development and causing severe scoliosis up to 80 degrees. This in turn affected her organ functions. As her lower body weakened, she required a wheelchair for mobility.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-02.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-03.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003e“I feel so lucky.”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eAt the age of 10, Kwan Yi underwent a high-risk spinal surgery to insert steel plates and bolts to prevent her scoliosis condition from worsening. Anyone watching could feel her suffering, but Kwan Yi had a different opinion. “Compared with Stephen Hawking, I think Hawking was in much more pain. He was perfectly fine at first, and then suddenly one day, he couldn’t stand up. But me? I’ve been like this since I was a child. I’m used to it.”\u003cbr\u003e\u003cbr\u003eKwan Yi’s condition kept going downhill. At first, she couldn’t walk. Then the atrophy spread to her jaw muscles and left hand. Some fingers couldn’t straighten…But Kwan Yi remains optimistic and ambitious. And her dreams are what drive her forward. “I feel like I’m making an exchange…I’m more fortunate than those who can walk but have no dreams.”\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-04.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-05.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003e“Coding games. I feel a sense of pride.”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThe word “game” alone would excite Kwan Yi. When it comes to ambition, Kwan Yi has it all figured out. She came across MIT’s game development programmes Scratch and App Inventor by chance a while ago. From then on, she’s been determined to pursue game coding. Her goal is to be admitted into the HKUTS. She has her mind set on becoming a computer game developer. “Creating one thing from nothing. That’s just sacred.”\u003cbr\u003e\u003cbr\u003eIn Kwan Yi’s world, there have never been empty talks. Last summer, she learnt the basics of web programming such as HTML and CMS. “This summer, I want to learn coding or other programming.”\u003cbr\u003e\u003cbr\u003eDuring our visit, Kwan Yi also showed us a delicately drawn painting. Our editor was totally amazed, “It was so beautiful! I would never have guessed that she made it!” Even Kwan Yi’s mum couldn’t hide her delight in Kwan Yi’s drawing talent. Kwan Yi also likes to play the piano and do digital graphics. She hopes that one day she can create her own computer game using her own illustrations and soundtracks!\u003cbr\u003e\u003cbr\u003e“I’ve also changed my English name because the new name has a dark side as well as a bright side.” Kwan Yi likes plot-rich RPG games and jokingly said that the character Chara best represents herself.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eKwan Yi likes to use the things she comes across in life as inspiration. She created “Magician A”「魔術師阿達魯多」based on Case Closed’s Kaito Kuroba. She also got inspiration from her mother’s succulent plants to create character “Meat meat”「肉肉」.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06-1_a6b6c67d-2db9-4267-87a4-d812d05904f7.png?v=1774256877\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-07.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08-1_c01c038f-1fe2-4338-b2f1-17e8abcbcf3f.png?v=1774256549\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-09.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eDrawings by Kwan Yi ：\u003c\/span\u003e\u003c\/h3\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-10.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-11.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-12.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-13.jpg?v=1774254782\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/14-1_c4d1a1a1-d0c2-4484-b65c-7aa2a314a669.png?v=1774256550\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-16.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-15.jpg?v=1774254780\" alt=\"\"\u003e\u0026nbsp;\u003c\/h3\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003eNear-Death Experience from Flu\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eUnderstandably, Kwan Yi had been on the dark side before. During one of her depressed phrases, she thought “My life didn’t really mean much. Only my parents will worry a bit. My friends won’t care.” But that all changed when Kwan Yi was brought to the brink of death during Lunar New Year earlier this year.\u003cbr\u003e\u003cbr\u003eThat time, Kwan Yi caught the flu. The simple flu almost cost her life. Her muscles atrophied and she couldn’t cough out mucus, causing pneumonia. She had to be admitted to the hospital and relied on equipment for breathing. But there was haemorrhaging in her lungs and the blood clots caused complications to the alveoli. She was in critical condition for three weeks. Her mother nearly lost her daughter.\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eDropping bean bags and pushing tennis balls can train hand muscles so that Kwan Yi can at least continue to draw and write.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-17.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-18.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003e“I will choose to live, even if my eyes are all that’s left of me.”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I stayed by her side every day to cheer her up and tell her to ‘Hold on!’” Even though Kwan Yi’s mother was terrified, she’d never given up and took care of her daughter round-the-clock. Kwan Yi’s mother got her motivation from her daughter’s willpower and clear resolve, “I will choose to live, even if all I can do is to see with my eyes.” Kwan Yi also once said, “Mum, don’t worry. I’ll support you in the future.” During those tough times at the hospital, Kwan Yi’s mother would bring this up and remind Kwan Yi of her own promises.\u003cbr\u003e\u003cbr\u003eTo reduce pain, Kwan Yi was administered morphine. “I was in a coma. I only knew I was on the brink of death when I woke up.” After that incident, Kun Yi finally understood that her mother had been her cheerleader every day. Momentarily, Kwan Yi let down her tough exterior and said, “I know she was devastated. She cried her eyes out. And it hurt.” Kwan Yi could feel her mother’s unconditional love for her, even though she didn’t use those words.\u003cbr\u003e\u003cbr\u003eFriends also gave their blessings to her, sending her cards full of encouraging words. “I was so moved when I received it. When I woke up, the sun was shining!” The fact that she is alive and she can dream, that’s the greatest gift of all. At the same time, Kwan Yi realises that her own life is of great importance to those around her.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-19.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-20.jpg?v=1774254780\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003eShe’s Not a Burden. I Can’t Lose Her.\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“She’s not a burden! I’ve never thought of giving up!” Kwan Yi’s mother emphasised repeatedly during our interview. “I used to think that it didn’t matter how long my daughter lived. The most important thing was whether we were living happily. But when that day arrived, I realised I couldn’t accept her leaving…I don’t think she’s a burden. I, on the contrary, think that I can’t lose her. She’s too important.”\u003cbr\u003e\u003cbr\u003eA straw shows which way the wind blows. In that tiny room with shiny clear windows. Every time Kwan Yi touches anything, her mother will immediately sanitize her hands carefully to avoid bacteria from threatening her life again.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\" class=\"txt-highlight\"\u003eLife is like a game. There are bound to be bugs.\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I think of myself as a god, creating my people and adding different colours to this world.” Kwan Yi’s favourite thing is computer game development. Perhaps, her life is like a game. As Kwan Yi once said, “There are bound to be bugs in creating a game.” If the bug appears, just accept it. There’s no need to complain. We can use our body’s limited “firearm” to overcome challenges and fight to the end!\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-21.jpg?v=1774254781\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-22.jpg?v=1774254782\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eBOX Spinal Muscular Atrophy\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e\u003cspan\u003eSpinal Muscular Atrophy (SMA) is a neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. The cause of SMA is still unknown, but it is believed to be related to genetic disease.\u003c\/span\u003e。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\u003cspan\u003eInterview and writing by張文意and Rochelle Leung\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eEdited by Rochelle Leung and Avy Ip\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePhotography by Sea.Pho.Yea and Colin Lam\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eVideography by Lifewire, Sea.Pho.Yea, Ken Mok and Ava Chan\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eMay 9, 2020 updated\u003c\/span\u003e\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_ff680bb3-6f77-4901-9f0a-5e2dc96361ab.png?v=1780459121\"\u003e\u003c\/span\u003e\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":"Kwan Yi Lai","offer_id":43243480907894,"sku":null,"price":300.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3611-00.jpg?v=1774253675"},{"product_id":"j2主持-文頌男","title":"患罕見癌J2主持 - 文頌男","description":"\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e患有罕見癌「尤文氏肉瘤」(Ewing sarcoma)的J2前主持文頌男（Koba），抗癌一年多後，於2024年7月13日下午，由朋友代為在Instagram上載他預先寫好的遺言，宣佈死訊。Lifewire已停收文頌男的捐款。\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003ciframe title=\"【#透視罕見病】J2主持文頌男 --人生最後一哩路的感激\" src=\"https:\/\/www.youtube.com\/embed\/oDWV2O-e7GI\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e在單親家庭成長，一度叛逆輟學，幸迷途知返，以優異成績考入教育大學，取得雙學士的文頌男，剛向着演藝夢想起步，擔任無綫電視J2台的《不正常愛情研究所》主持一年多，卻突然患上罕見癌「尤文氏肉瘤」(Ewing sarcoma)，腰痛得只得跪着休息。他最大的心願不是攞金像獎、拍大片，而是一盡孝道：「希望有能力畀家用媽媽。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-01.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-02.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e撐着枴杖、在朋友攙扶下，文頌男(Koba，29歲)電療後一瘸一拐地步出屯門醫院。在近30度的高溫下，他還需穿着一件厚絨外套，「醫院入面啲冷氣好大風」，他有氣無力地解釋着說；之前化療時一度掉光了的頭髮、眉毛，已重新長出。登上的士回家，但長在尾椎的尤文氏肉瘤卻令他痛得坐不下，只能跪在車廂裏。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-03.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-04.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e幾經轉折 確診罕見癌\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eKoba 在2023年4月開始感到腰痛，起初不以為意，「諗住可能瞓下就會好返」。但過了兩個月，痛楚卻不斷加劇。他向脊醫和中醫求診，「嗰陣脊醫幫我照X光，佢睇張片睇唔到有問題，仲覺得條骨好靚添。」醫生推斷是坐骨神經痛，雖然每次治療後，疼痛會紓緩一兩天，但不久便繼續惡化，「係越嚟越痛，後來痛到連行路都趷下趷下。」\u003c\/h4\u003e\n\u003ch4\u003eKoba 於是轉向公立醫院骨科求醫，但排期長達一年，當時已經劇痛纏身，「我睇我個惡化速度，冇可能等到一年，所以聽朋友建議，去咗內地睇深圳港大醫院(香港大學深圳醫院)。」兩三個月內做了不同檢查：CT掃描、MRI、穿刺活檢等。\u003c\/h4\u003e\n\u003ch4\u003e最終在10月診斷他在骶骨附近生了一個約6厘米大的腫瘤，是骨癌中罕見的骨肉癌「尤文氏肉瘤」。因為他在內地沒有親人，醫生建議他馬上回港衝到急症室求醫。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「有錢有得醫，冇錢等下先」\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「係急症室排咗十幾廿個鐘。我仲記得嗰日係劇痛，我攤喺病床度一路痛緊，同朋友講覺得要死喇，講定好多遺願畀佢哋聽。」Koba一度想外出吃飯，問護士可否保留病床，但卻換來對方的冷言冷語，他惟有回到床上，卻再也忍不住落淚飲泣。\u003c\/h4\u003e\n\u003ch4\u003e「我唔係因為佢鬧我而喊，而是我發現，點解我要咁慘，連生cancer都要去衝急症室排十幾廿個鐘，我已經痛到唔係好行到，淨係想留返張病床喺度啫」，「就係因為我窮，我冇錢去睇私家，我當時明白一個道理『有錢有得醫，冇錢你咪等下先』囉 。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-05.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-06.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e劇痛折磨 仰仗嗎啡控制\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「本身我覺得癌症呢樣嘢距離自己好遠、好陌生，冇諗過自己會發生呢樣嘢，唔係好知係咩一回事。」他一邊求醫，一邊上網搜集資料。「發現好多人都話癌症有得醫，不過係指普通啲嘅癌症，未必係我呢種罕見嘅cancer。」\u003c\/h4\u003e\n\u003ch4\u003e加上腫瘤壓迫著神經，導致行動不便，劇痛煎熬，「痛到接近失去意識，情況好的話，可能痛兩三個鐘；唔好嘅話，就可能痛六個鐘、十幾個鐘都唔會停。」而且坐一會兒便會痛，所以只能跪着，痛楚才比坐下或躺卧時輕。\u003c\/h4\u003e\n\u003ch4\u003e醫生向他表示，這癌症有六至七成人可以活過五年，安排他先接受化療，然後電療。然而化療結束後，卻發現無效，腫瘤反而變大，達7厘米，令他心情一度墮入深淵，質疑「我仲醫唔醫得好呢 ?」\u003c\/h4\u003e\n\u003ch4\u003e等待電療的兩星期更像渡日如年，「開始越嚟越痛，痛到瞓唔到，無論咩姿勢、瞓喺度咩姿勢都唔得。」醫生處方的口服嗎啡份量，也由最初的5ml增至20ml才能入睡。有時劇痛難耐，要跪着等待「無咁痛」的一刻才睡着，但不久又痛醒。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-07.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-08.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-10.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-11.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e擔憂治癌費用高昂\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e直至電療展開後，加上他不斷迫自己進食、飲營養奶、服用營養補充品，打好抗癌底子，Koba狀態改善，但改變不了矛盾的心情。「每一個治療階段我都好擔心：未做化療前唔想做化療，驚好辛苦。做緊化療時又唔想完化療，因為好驚收到消息話治療無效。」\u003c\/h4\u003e\n\u003ch4\u003e「其實依家心情都係咁：做緊電療，就好想時間永遠停留係做電療呢一個moment。因為我好驚做完電療之後，唔知會收到咩消息。」\u003c\/h4\u003e\n\u003ch4\u003e「如果電療都冇效，咁可能公立醫院已經出盡法寶，到時可能要去(外面)搵啲特別嘅癌症藥、或者療法，動輒幾十萬，我好擔心，因為我無可能afford到。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-12.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-13.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e全面停工 支出不斷\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e他現時需要依賴嗎啡和各種止痛藥減輕痛楚、服用通便藥緩解嗎啡帶來的便秘，同時要購買營養奶和其他營養補充劑來支持身體對抗癌魔。\u003c\/h4\u003e\n\u003ch4\u003e因為身體虛弱、痛得無法長時間坐著，只能跪着乘車，往往要乘搭的士覆診，一旦要從屯門寓所到港島區、及數個地方檢查，一天的交通費已經逾千元。還有每月的CT、MRI和全身檢查等，每次約需數千至萬餘元，每月的總支出近四萬元，相當可觀。\u003c\/h4\u003e\n\u003ch4\u003e但他因體力無法負荷，行動不便，在確診癌症後已停工，收入頓失，依靠年逾60的媽媽維持生計。媽媽為了日間可以照顧他的起居、陪伴覆診，於是改為在晚上返清潔工作，更為兒子的病情偷偷飲泣，令他很心痛。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-14.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-15.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e感激母親 無私的愛\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e說起媽媽，Koba終於禁不住落淚。他12歲時，爸爸為了第三者出走失蹤，更留下一筆巨債。媽媽捱着抑鬱，身兼數職還債養家、照顧一對子女，導致母子聚少離多，關係疏離。\u003c\/h4\u003e\n\u003ch4\u003e他坦言青春期時十分反叛，輟學、流連街頭：「其實我有諗過….當初阿爸失蹤果時，佢(媽媽)揼低我哋咪得囉，佢咪唔使咁辛苦囉」Koba哽咽着說，「但係佢冇咁做，佢係咁愛我哋，咁堅持。越大我越發現原來我阿媽為咗我哋付出咗好多。」\u003c\/h4\u003e\n\u003ch4\u003e媽媽捱了十多年，近年終還清債務，以為可以鬆一口氣，怎料兒子卻突然患上惡疾。「佢一直都冇閒錢留畀自己，退休生活冇保障，我覺得對佢好愧疚。」他打算一旦重拾健康，就和媽媽去旅行，讓她輕鬆一下，更希望自己有能力給她家用，「原本應該畢咗業就要畀家用，但係直至我病咗，我都仲未畀家用佢。」看似輕而易舉的事情，現卻難如登天。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-16.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-17.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e迷途知返 重投校園\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e對於跨過障礙，Koba也不陌生。他中學一度輟學，迷失一年多後醒覺，決心重返校園，但處處碰壁，「當時覺得自己好垃圾、好廢，冇知識冇學識冇錢，就算想讀番書，學校都唔收。」但他沒有放棄，終獲職業訓練局錄取，「有個老師interview時，問了我一個問題：『你會唔會應承我，好好地畀心機讀書?』我聽到佢肯畀機會我，就一口應承。」\u003c\/h4\u003e\n\u003ch4\u003e自此無論是讀文憑、升讀高級文憑、香港教育大學藝術管理及藝術教育雙學士，他都對自己要求很高，更考獲不少獎學金。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-09.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-19.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e夢想遙遠 觸手不及\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e重返校園更讓從小愛表演、做話劇的Koba，找到自己的夢想--演戲。他大學時期曾經歷情緒低潮，機緣巧合下參加音樂劇社，遇上一位好導演教他演戲，他透過戲劇和舞台，探索和了解自己更多，「真係好難形容嗰種感覺，嗰種好美好的感覺，就是很享受去表現自己，去演出畀人睇。」\u003c\/h4\u003e\n\u003ch4\u003e他開始爭取機會入行，無論是做演員還是主持，接廣告、直播帶貨、YouTube頻道、不停參加試鏡，把握每個拍攝機會。終於有機會加入電視台擔任節目主持，向夢想邁步。同時從其他主持、監製、前輩身上學習，希望讓演藝生涯走得更遠。\u003c\/h4\u003e\n\u003ch4\u003e可惜天意弄人，他擔任主持大約一年便病倒，看似觸手可及的夢想逐漸變得遙遠。Koba現在抱著平和的心態看待病情，「有啲人可能會話好積極呀好樂觀，但我唔會，我又唔會呃自己話，一定好有希望可以打贏呢個病。」\u003c\/h4\u003e\n\u003ch4\u003e他清楚得很，就算日日以淚洗面，「我都係咁痛，我都係要過日子，而家我選擇有得開心果陣就開心啲囉。」希望可以活得多久就多久，「可以活得無咁痛，就已經滿足，可以和屋企人、朋友度過，就已經好享受。」\u003c\/h4\u003e\n\u003ch4\u003e收藏不少《娃鬼回魂》Chucky的Koba，除了希望可以將僅有的少量儲蓄留給媽媽，「我諗會寫封遺書提佢哋，啲物品唔好掉，好值錢㗎，係收藏品，賣返出去仲可以賺幾多㗎。」他笑着說。\u003c\/h4\u003e\n\u003ch4\u003e一直強忍痛楚受訪的Koba，談起心愛的Chucky便禁不住綻開笑顏，如數家珍，「呢隻女仔叫Tiffany，係佢(Chucky)老婆」，「呢個可以拆個頭落嚟」，被病魔迫着老化的他，露出一絲童真。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-18.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-20.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e以自身經驗提醒大家：咁後生都可以罹癌\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e自言貪靚的Koba化療時，掉光了頭髮和眉毛，但他很快便接受了外型的轉變，「一開始好失落，但知道自己係病，係會咁嘅樣，用咁嘅面目示人，唔係一件羞恥嘅事，希望可以令多啲人aware自己嘅健康：原來咁後生都可以有cancer，早啲關注飲食、健康，都係一件好事。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-21.jpg?v=1774324993\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-22.jpg?v=1774324994\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e感謝朋友、素未謀面的善心人幫助\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e笑言自己朋友不多的Koba，謂如果辦生前喪禮，也可能只有兩三個朋友出席。然而「貴精不貴多」，他的朋友在得悉他生病後，紛紛主動幫忙照顧、陪伴覆診，有人甚至專程從加拿大回港，分擔文媽媽的負擔。「我多謝我所有朋友，佢哋好似輪班咁照顧我，見我有咩需要就嚟幫我。」\u003c\/h4\u003e\n\u003ch4\u003e「我多謝好多網絡上嘅陌生人，佢哋不斷畀好多鼓勵我，係咁同我打氣加油，甚至捐款、捐supplement畀我。」他以前覺得香港人很冷漠，「依家發覺原來唔係呀，香港人其實真係好有善心，當知道有人有困難，係會幫助佢哋。」\u003c\/h4\u003e\n\u003ch4\u003e「如果我之後好返，我會盡力去幫番其他人，呢啲係每一個幫助過我嘅人教識我嘅嘢。」\u003c\/h4\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\n\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-23.jpg?v=1774324994\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-24.jpg?v=1774324994\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-25.jpg?v=1774324994\"\u003e\n\u003c\/div\u003e\n\u003cp\u003e\u003cimg style=\"display: block; margin-left: auto; margin-right: auto;\" alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-26.jpg?v=1774324994\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: black;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #CCCCCC;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e電療後再度入院\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(0, 0, 0);\"\u003e訪問後不久，Koba完成電療，一度感覺病情明顯改善，不僅痛楚減少，身體也逐漸恢復。但到6月中，他在社交平台透露，持續多日出現頸背痛及頭痛，要入院檢查，留醫5日後出院。 「即使身體不停發抖、用唔到力又痛，甚至連咀嚼都變得困難，我仍然堅持住，冀望有一日可以重獲健康……我每日都同自己講，再捱一吓，可能明天會好啲……即使面對咁多困難，我都會繼續努力，因為我冀望著總有一日，一切會變好。」\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e每月支出項目：\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e嗎啡、止痛藥\u003cbr\u003e通便藥\u003cbr\u003e營養奶\u003cbr\u003e營養補充品\u003cbr\u003e的士交通費\u003cbr\u003eMRI磁力共振\u003cbr\u003eCT電腦掃描\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e共逾3萬元\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e採訪、撰文：黃穎彤、陳偉麒、梁劍紅 \u003cbr\u003e編審：陳偉麒、梁劍紅 \u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok \u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"文頌男","offer_id":43243485200502,"sku":null,"price":140.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3631-00.jpg?v=1774324726"},{"product_id":"罕見血癌童拒放棄-麥韶洋","title":"罕見血癌童拒放棄 - 麥韶洋","description":"\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e韶洋一家在Lifewire及其他善長的支持下，2022年8月26日啟程前往深圳，以CAR-T療法移植爸爸的細胞，病情一度有好轉，但其後卻急劇惡化，最終在10月15日不敵癌魔離世。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e從黑暗到曙光，從谷底到希望；\u003cbr\u003e12歲的麥韶洋，兩年前發現患上罕見血癌，\u003cbr\u003e經歷多次復發，熱愛攀石的媽媽也沒被擊沉；\u003cbr\u003e一家三口憑着對活下去的堅持， 一次又一次衝破難關，\u003cbr\u003e如今來到最後一關，若然成功便能移植骨髓，\u003cbr\u003e媽媽選擇再次相信奇跡 ：\u003cbr\u003e「喺我mind set入面，冇嘢係冇可能，只係你做唔做啫！ 」\u003c\/h4\u003e\n\u003ch4\u003e「Hello，我係韶洋，我今年12歲，患咗急性淋巴白血病。」剛從香港兒童醫院覆診回家的韶洋，因抵抗力差，不能進食街外食物，津津有味地吃過媽媽Katherine親自下廚的煎牛舌後，倚在媽媽懷中，接受Lifewire團隊訪問。他沒有說出甚麼感人肺腑之言，2020年底證實患上急性血癌的韶洋，也只是個對著鏡頭會靦腆的小孩，但一個突如其來的罕見病，卻使他的經歷變得不平凡。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-01.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-02.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e10歲患罕見血癌：我係咪會死？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「2020年12月13日，阿仔突然淋巴位腫得好犀利。早兩日佢個身出咗好多紅點，但個人冇事又冇發燒，帶佢睇家庭醫生。」當時家庭醫生著媽媽不用太擔心，吩咐她待韶洋發燒才看急症，豈料韶洋的病況急轉直下，「到嗰晚（淋巴）腫晒，先生帶咗佢去醫院睇急症，call咗兒科醫生返嚟。醫生見到好急，同埋個病情都唔係好尋常，我哋都感覺到佢嗰一下(危急)」媽媽說當時醫院本應因疫情而禁止探訪，但院方還是特別豁免，讓她通宵留守在韶洋身旁。\u003c\/h4\u003e\n\u003ch4\u003e翌日早上，醫生告知媽媽，韶洋的白血球指數比正常高出200倍，並馬上為他安排檢查，最終驗出韶洋患上白血病，而且是罕見的T細胞，佔小童罹患急性淋巴白血病的15%。「佢(韶洋)知道個壞消息都好愕然，跟住問我哋『我係咪會死呀？』」一個或許連成年人也沒有思考過的問題，媽媽被10歲的兒子問得無言以對。\u003c\/h4\u003e\n\u003ch4\u003e韶洋年紀雖小，但媽媽認為他能獨立思考，所以每次與醫生開會也讓他參與，讓他更了解自己的狀況。發病至今，小小的身軀已經歷三次全身麻醉的手術，術後更痛得要以嗎啡止痛。化療的煎熬加上藥物副作用，一向樂天的他也開始出現負面想法。媽媽說：「十幾歲就打嗎啡真係唔理想，佢嗰日都痛到話『不如死咗佢啦！』」最終醫院找來心理學家，輔導這個抗癌小戰士。\u003c\/h4\u003e\n\u003ch4\u003e「喺7月尾，嗰日抽完骨髓，夜晚我同先生就收到醫生電話，似乎有啲唔係咁好嘅消息，(醫生)同我哋講（韶洋）骨髓入面原本得返0.57嘅壞細胞，突然升咗一百倍去到64。」\u003c\/h4\u003e\n\u003ch4\u003e接到噩耗後，一家翌日趕到醫院。醫生坦言以韶洋的狀況屬多次復發，繼續接受化療成效不大；院方更提議讓韶洋接受紓緩治療，但兩母子都拒絕放棄。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-03.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-04.jpg?v=1774337767\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e骨髓移植前再復發   功虧一簣\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e其實韶洋的病情一度出現曙光，去年更準備重返校園，無奈11月復發；原定3月進行的骨髓移植手術，又因他曾多次打「背脊針」治療，需待中樞神經復元而延遲兩個月；但臨近手術前，韶洋的癌細胞指數卻再次起伏不定，導致要再度延期。媽媽慨嘆：「由第一次確診到復發，而家又話冇藥醫，其實一個循環喺度loop，都好似見唔到個盡頭。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e生死邊緣掙扎   仿如「魷魚遊戲」\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e她難忘韶洋去年11月首次復發時，在生死邊緣掙扎。當時韶洋一度「屙血」，一家人相當徬徨，「嗰時用緊一隻叫做『藍藥水』，真係超級勁嘅藥。一嚟可能用重化療個side effect真係好強勁，二嚟係腸受細菌感染。」「佢病發前成日睇魷魚遊戲，我話『你知唔知你而家好似魷魚遊戲嗰啲情形，我好驚呀!』」\u003c\/h4\u003e\n\u003ch4\u003e「醫生都好似講到好差，『佢過到呢三個月重藥期，先再睇下做唔做到骨髓移植啦。』」\u003c\/h4\u003e\n\u003ch4\u003e但無論是「重藥期」，或是要找合適骨髓，甚至是2月感染COVID-19，韶洋一家人都關關難過關關過，「其實好多次checkpoint，我哋覺得都係唔得㗎喇，搞唔掂，但係奇蹟一次又一次咁出現。」\u003c\/h4\u003e\n\u003ch4\u003e在韶洋希望生存下去的強烈意願支持下，一家人積極尋求出路。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-05.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-06.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e唯一轉機   離港就醫\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e媽媽與兒童醫院顧問醫生李志光教授商量過，對方認為韶洋病情不容再拖，希望能一擊即中清除體內的癌細胞，以安排骨髓移植手術，否則即使有合適的骨髓，手術成功率也只有4成。李教授建議韶洋嘗試治療癌症的最新技術：CAR-T（Chimeric antigen receptor T-cell，嵌合抗原受體T細胞療法）。\u003c\/h4\u003e\n\u003ch4\u003e據港大醫學院內科學系的資料顯示，CAR-T是近年醫學界致力研究療效較持久的免疫治療，透過患者自身免疫系統消滅癌細胞，以提升復發性急性淋巴白血病患者痊癒的機會。惟CAR-T治療現時在香港只獲准在較常見、且臨床經驗較豐富的B細胞白血病患者使用，韶洋所屬的T細胞則仍屬試驗階段，未有涵括在內，故韶洋一家須自費到外地就醫。\u003c\/h4\u003e\n\u003ch4\u003e「有錢有得醫，冇錢冇得醫。」媽媽道出殘酷的現實。她物色了幾個可行地方：新加坡花費逾200萬元，美國所需的費用更是天文數字。至於深圳，入院前須接受十天隔離，對於每星期至少覆診兩次的韶洋來說，有一定風險，但考慮到經濟因素，加上希望在韶洋的白血球指數尚算理想時進行治療，家人也只能如此選擇。\u003c\/h4\u003e\n\u003ch4\u003e「國內見到都多同韶洋相似嘅案例，同埋兩地有學術交流，信心都會提高啲。」韶洋今年8月尾，在父母陪同下出發前往深圳。隔離期間，媽媽要密切留意韶洋有否出現發燒、屙嘔等情況，香港兒童醫院的醫生團隊也準備了醫生信，以防韶洋在突發情況下需緊急送院。「其實呢刻可以講冇得選擇，只要係一線生機，我哋成家都唔會放過每一個機會。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-07.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-09.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e攀石家庭   抓緊希望不言棄\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「最辛苦是『落藥』時，會攰、無力。會發噩夢，發高燒」，韶洋說化療的日子會累得連心愛的遊戲機也打不到，只能睡覺。但其實他發病前相當好動，而媽媽與丈夫當年因攀石結識，自然也會選擇帶兒子攀石「放電」。\u003c\/h4\u003e\n\u003ch4\u003e除了讓兒子發洩精力，媽媽更希望他從中學懂克服困難，「其實攀石每一步都係面對逆境，當你做到之後成功感好大，其間要不斷嘗試。成日講要相信咗自己先，如果你唔信、唔踏出第一步，冇人幫到你。」\u003c\/h4\u003e\n\u003ch4\u003e從攀石中領悟到的道理，媽媽希望能用在這次漫長的療程中，成為韶洋的抗癌動力。貪吃的韶洋，也沒讓母親失望，媽媽笑說：「佢治療期間喊係為咩呢，冇得食嘢囉！」\u003cbr\u003e媽媽現時唯一心願，就是韶洋可以順利完成CAR-T療程，回港進行骨髓移植，與他再享用一頓因病久違的自助餐，圓愛兒心願。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-10.jpg?v=1774337767\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-13.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e同路人有愛   集腋成裘\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e這次深圳治療，基本治療費約70萬元，連同萬一遇上最壞打算要入住加護病房，總共約100萬。拮据之際，媽媽得到醫務社工等人鼓勵，「佢哋同我哋講，『出聲啦，出聲就有人幫你，香港好少唔會幫小朋友。』」\u003c\/h4\u003e\n\u003ch4\u003e她最終鼓起勇氣，聯絡傳媒眾籌，結果一呼百應。除了醫療開支，媽媽亦感謝各界在各方面的支援，包括韶洋曾經暫住的療養屋、防疫物資等，還有其他團體送贈遊戲機和迪士尼樂園門票等，完成韶洋的心願。\u003c\/h4\u003e\n\u003ch4\u003e當中包括媽媽和韶洋參加的歌迷會，一向積極參與慈善活動。在韶洋患病後，不僅歌迷會成員出錢出力支持，偶像更公開呼籲社會大眾捐贈骨髓。媽媽感謝各界對韶洋和整家人在物質和心靈上的支持，慶幸香港人仍有一份互助互愛的精神：「當自己應付唔到一啲負能量，就惟有借助大家力量幫手集氣，先可以撐到今日。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-11.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-12.jpg?v=1774337766\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e過好每天   再作打算\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e縱使前路未卜，韶洋還是拿出一盒建議年齡比他大6歲的林寶堅尼跑車Lego與媽媽一起砌，希望能在出發前完成；一時又用善長捐贈的軚盤打賽車遊戲。他希望18歲考車牌後，買一輛電動車，還已經向媽媽介紹心愛型號。\u003c\/h4\u003e\n\u003ch4\u003e曾因留醫治療、十多日見不到爸爸的他，現最想爸爸揸七人車，因為「可以一齊去玩」。近一年全職照顧兒子、沒有外出工作的媽媽，也慢慢放手讓孩子做自己喜歡的事。\u003c\/h4\u003e\n\u003ch4\u003e「我由細到大同佢講：生老病死其實係人生必經階段或者循環，同太陽日落日出一樣。去到呢個關頭，一定係會唔捨得，都唔想發生啦當然，但都要正面、樂觀。」近一整天的家訪，媽媽訴說著這兩年間陪伴韶洋走過的路——有擔憂、有對醫療體制的不滿，但更多的是對韶洋活下去的渴望。\u003c\/h4\u003e\n\u003ch4\u003e「無論好嘅結果，唔好嘅結果，我哋一齊去面對。」預備迎接未知的將來，媽媽看來淡然，卻充滿力量的留下這句。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-14.jpg?v=1774337767\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-08.jpg?v=1774337767\" alt=\"\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e韶洋去世後，媽媽Katherine向Lifewire團隊訴說，韶洋的遺願是爸爸媽媽能好好生活下去。他慶幸能跟媽媽學習攀石，並感謝父母陪他走完最後一段路。 願韶洋爸媽能早日走出傷痛，面對困難時要銘記，曾經有一位如此堅強、懂性又窩心的兒子。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪及撰文：蕭愷智、梁劍紅\u003cbr\u003e編審：陳偉麒、梁劍紅\u003cbr\u003e攝影：林栢鈞、Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Sea.Pho.Yea、Ken Mok\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"麥韶洋","offer_id":43243485364342,"sku":null,"price":130.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3624-00.jpg?v=1774334107"},{"product_id":"女孩勇戰嚴重脊彎-黎藹楹","title":"女孩勇戰嚴重脊彎 - 黎藹楹","description":"\u003ch4\u003e「我係Karen，今年11歲，我有脊椎側彎。」瘦削的黎藹楹 (Karen)，開朗愛笑，驟眼看上沒甚麼不妥，但走路時，從背影細看，背部呈現高低不平，坐下時脊柱側彎情況更明顯。\u003c\/h4\u003e\n\u003ch4\u003e「有日媽媽幫我洗澡時發現的。」2019年檢查時未發現異樣，至去年10月，黎媽媽忽然留意到女兒腰背帶點傾斜，「見佢背脊，就覺得佢有脊柱側彎，因為佢堂姐也有相同情況。」\u003c\/h4\u003e\n\u003ch4\u003e媽媽大為緊張，隨即帶女兒求醫；醫生也不敢怠慢，即轉介她到屯門醫院作深入診治。最後跟堂姐一樣，確診脊椎側彎。那一刻，媽媽的心頭像被重槌了一下，「好緊張、好擔心，點解又係我家族，先生已過身，點解我個女又有病？心情難以形容。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-01.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-02.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e側彎嚴重　42度惡化至52度\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「當時一邊突起，另一邊縮入去，側彎情況嚴重。」幾經輾轉，Karen被轉介到大口環根德公爵夫人兒童醫院就醫。「我成日叫佢拉筋，醫生冇叫，我自己叫佢做，總覺得做下會好啲。」原先的治療計劃是先以矯正器矯正，再排期進行手術。「醫生要佢戴矯正器，每天戴好多個鐘，但佢唔願戴。」矯正器如腰封，由胸部至腰部，每日需佩戴十多二十小時，由於矯正器較硬又貼身，大熱天尤其不好受，但為着健康，Karen也得默默忍受。\u003c\/h4\u003e\n\u003ch4\u003e不過，短短三個月，Karen的脊柱側彎就由發現時的42度，加劇至受訪當日的52度。若嚴重下去，或會影響內臟功能，有機會出現肺活量減少、氣促等嚴重症狀；小妮子無奈需提早接受手術，以防加速惡化。\u003c\/h4\u003e\n\u003ch4\u003e雖有手術可矯正，但堂姊前車可鑑——手術前尚可彎腰，手術後雖糾正了問題，卻產生了更多限制。堂姊做的是傳統脊柱側彎手術，需在脊柱左右兩側置入磁控延長棒，矯正側彎程度，但手術後不可彎腰，不可做任何運動。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-03.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-04.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e新技術 可運動 可彎腰\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e還幸醫學不斷進步，為Karen帶來好消息——可進行新型的「前椎體螺絲釘拴繫技術」(VBT) 微創手術。「醫生話新型微創手術效果相對較好，手術後可如常做運動，也可彎腰。」此手術在背部開微創傷口放置螺絲，隨著患者長高而拉直脊柱，因此並非即時矯正，至少需要觀察兩三年時間，觀察植入式韌帶的矯正程度。 「如果呢個手術唔成功矯正，就要再做手術，即係堂姊做嘅舊式脊柱矯正方法。」一切隱憂，令媽媽的心頭大石難以放下。\u003c\/h4\u003e\n\u003ch4\u003e「我先生四年前患上了神經元疾病*(註1)，無藥可醫，亦得唔到任何幫助。」傷痛還未及療癒的黎媽媽，新傷痛突來襲。憶述數年前丈夫患病離世，眼淚不禁奪眶而出，當時唸大學的哥哥還未畢業，一家肩擔都落在媽媽身上，壓力極大。\u003c\/h4\u003e\n\u003ch4\u003e近年哥哥投身社會，困境稍為紓緩了，但哥哥收入還不足以支撐一頭家，媽媽仍需上班減輕負擔。「一定要返工，個女仲細，唔可以唔返工。」她每天上班前先帶Karen到外婆家，待下班才接她回家。勞勞碌碌、營營役役，但相比Karen的病況，顯得微不足道。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-05.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-06.jpg?v=1774339922\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e借錢也做手術   只盼女兒堅強\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「私家醫院做手術大約要五十萬，政府醫院做也要十幾萬。」對收入僅夠糊口的病患家庭來說，實是無法應付，「而家申請緊基金！我無理由要佢咁樣，係咪先？！無辦法，如冇基金，借錢或其他方法都要去做。」\u003c\/h4\u003e\n\u003ch4\u003e「你堅强啲就足夠了。我經常講最重要你過得好、身體健康，知唔知？」一臉稚氣的Karen，並未意識到脊柱側彎的嚴重性，她相信只要完成手術後就會有所改善，不知自己其實已受到影響。\u003c\/h4\u003e\n\u003ch4\u003e「她經常話媽媽我好攰。出外走一陣、走路時間長啲，佢就覺得攰，問可唔可以返屋企？佢自己都冇為意有呢啲轉變。」惟旁觀者清，心細如塵的媽媽把一切看在眼裏，「因為佢唔知自己有大事發生！」媽媽難忍女兒受折騰 ，邊說邊摸著Karen的頭，難掩憂心痛心。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e女：唔好擔心，冷靜啲！\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e跟母女倆相處大半天，媽媽一直表現平靜，但甫提及女兒突如其來的病症，媽媽如被觸動了淚腺神經，禁不住潸然淚下。刻意要自己平復的媽媽，深深吸一口氣，淚水都被強忍下去，叮囑女兒：「醫生叫你唔好孭太重書包行樓梯，唔好單肩孭書包，最好用背囊。」\u003c\/h4\u003e\n\u003ch4\u003e慶幸校方亦有支援，可讓Karen乘搭升降機，或安排職員替她拿書包到課室，亦請社工提供協助。一直默默地依偎媽媽旁的Karen，未見擔憂，一邊遞上紙巾為媽媽拭淚，一邊安慰：「唔好擔心，冷靜啲！」眼前這女孩，笑起來有一雙月牙眼，乖巧的她會分擔家務，如接叠被鋪、晾衫和簡單煮食等。\u003c\/h4\u003e\n\u003ch4\u003e問她有因為脊柱側彎感到不舒服嗎？「冇！」日常生活受到影響嗎？「冇！」長時間乘車會易疲倦嗎？「唔會！」可以如常運動嗎？「可以！」有擔心做手術嗎？「堂姊話做手術時唔痛，因為有麻醉藥，好似瞓覺一樣。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-07.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-08.jpg?v=1774339922\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e愛畫畫彈琴 全屋皆展品\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e訪問了大半天，害羞的Karen 大部份時間均安靜地待在媽媽身邊，只作簡短回應，直至分享她的畫作，她即如開籠雀般雀躍。她喜歡彈琴，更愛畫畫，她的畫作和揮春在家裏牆壁四處可見，為這家帶來溫暖和生氣，她介紹作品時，難掩對畫畫的喜愛。問及將來最想做甚麼，她笑得露出「腰果眼」，媽媽笑著搶白，「佢講過想做設計師，但每兩年就轉一次，細個時曾希望做麥當勞職員，因鍾意去麥當勞。」但願充滿童真的Karen手術成功，繼續擁有無憂無慮的童年。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-09.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-10.jpg?v=1774339921\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e脊柱側彎影響心肺功能\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e常見於10至18歲青少年的「特發性脊柱側彎」，本港青少年發病率約為3.5%，如不治理，有機會持續惡化，使脊柱彎曲角度超過50度，成長後會以1年彎1度的情況惡化下去，長遠會影響心肺功能。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\n\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-11.png?v=1774339922\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-12.png?v=1774339921\"\u003e 採訪、撰文：林雪佩、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"黎藹楹","offer_id":43243485724790,"sku":null,"price":120.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3619-00.png?v=1774339166"},{"product_id":"鬼門關搶救肌萎兒-楊君臨","title":"鬼門關搶救肌萎兒 - 楊鈞澈(楊君臨)","description":"\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e鬼門關搶救肌萎兒 母：「照顧你到最後」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我諗住長命百歲！」\u003cbr\u003e5歲確診肌肉萎縮的君臨，昏迷前的這句話，驅使媽媽決心把他搶救過來。\u003cbr\u003e能伴隨兒子走到最後一刻，已是媽媽的最大回報。\u003cbr\u003e「你一日喺度，我一日都會喺你身邊照顧你，知唔知呀！」\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-02.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-03.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e甫踏進家門，就看見楊媽媽馬不停蹄為兒子準備午餐、搔癢、轉身……患有「杜興氏肌肉營養不良症」的楊君臨，正坐於客廳專注地上網課，升降桌上擺放着平板電腦和一份工整秀麗的手抄三字經——縱使難以活動，他仍堅持一筆一筆的完成功課。他坐着的「龍椅」，旁邊擺放着抽痰機、氧氣機和胃喉等各種維生儀器，媽媽向 Lifewire 團隊細數着照顧君臨的日常工序。\u003c\/h4\u003e\n\u003ch4\u003e此病患者平均預期壽命只有26歲，22歲的君臨算是步入了晚期。跨越過鬼門關，如今插着胃喉和呼吸機的他，連說話也有困難，只能點頭搖頭示意。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-04.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-05.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e搶救？放手？兩難抉擇\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「2020年11月，佢血氧低，呼吸唔到，好困難，加上我照顧佢咁耐未試過條頸咁脹，所以即刻call白車入院。醫生都知佢呼吸差，但因為頸脹，未搵到原因前都用唔到儀器幫佢呼吸，但後尾都唔得呀，因為真係唔夠力呼吸……個人好瘦好瘦，直頭係皮包骨…… 」\u003c\/h4\u003e\n\u003ch4\u003e憶起那時骨瘦如柴、僅剩27公斤的君臨，媽媽即時雙眼決堤，更痛心是需決定兒子的生死，「醫生解釋，咁嘅情況係唔得架喇，一係插造口，一係等佢慢慢唔呼吸，自然去啦⋯⋯」要搶救還是放手？任何人也難以抉擇。\u003c\/h4\u003e\n\u003ch4\u003e「我知道你（當時）好用力呼吸㗎，係咪根本好唔夠力呼吸，好辛苦呀？」望向身旁的君臨，媽媽餘悸猶存，「佢喺醫院唔用呼吸機呼吸咗兩日，我知道佢辛苦。之後嗰晚六點幾，佢瞇埋眼叫極都唔醒，護士要開到一百度氧氣急救。」\u003c\/h4\u003e\n\u003ch4\u003e媽媽固然不捨兒子，但也擔心他往後只能痛苦地過活。猶疑間，她本致電學校社工，了解相同經歷的同學插喉後狀況；豈料君臨的情況突急轉直下，血氧越跌越低，護士催促媽媽決定。內心掙扎之際，媽媽突閃過君臨昏迷前的一句話，「『我諗住長命百歲。』我知道佢唔想死，先決定幫佢插喉。」甦醒過後，君臨問身上為甚麼插着造口。楊媽媽解釋不插喉便會死，懂事的君臨即明白媽媽的決定。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-06.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-07.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e見證身體漸差　無能為力\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「對腳冇力、小腿啲肉好實，同埋好難踎低，行樓梯都好慢、好吃力⋯⋯」君臨的病徵自小已出現，但一般人對罕見病的認知不足，媽媽最初誤以為他小腿肉肌肉強壯。到君臨五、六歲時因患上肺炎入院，醫生始診斷他患上發病率僅五千分之一的「杜興氏肌肉營養不良症」。\u003c\/h4\u003e\n\u003ch4\u003e往後的十多年，君臨的身體逐步退化，「行路、手力、腳力，講嘢都係，之前都講得流利啲，後來講講下都好似口吃咁。」試過運動、物理治療、飲食等不同方法，都無能為力，只能眼白白看着機能持續流逝：「佢唔係突然變到好差，而係慢慢咁差落去，想阻止都阻止唔到呀⋯⋯」話未講完，廚房的鬧鐘響起，媽媽即怱忙入廚房煲中藥——縱使無甚希望，楊媽媽從未放棄，千方百計舒緩其病情，只求讓他多活一天。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-09.jpg?v=1774405314\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-10.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-11.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-12.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e夜半煲湯　只為兒最佳吸收期\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e家訪當天，氣溫接近30度，Lifewire團隊都大汗淋漓，媽媽卻為君臨喊熱而高興。「出院冇幾耐，隔一陣就要抽痰，冇風扇冇冷氣，但佢『攝一攝』已經冷親，試過連續不停抽痰兩、三個鐘，幾乎大家都唔使瞓呀！」君臨出院以來，楊媽媽全天候開動：魚湯、粥水，中藥……絞盡腦汁，只為讓君臨攝取更多營養，「入院時，煲極湯同嘢食畀佢，都係唔吸收，（體重）只跌唔會升。」\u003c\/h4\u003e\n\u003ch4\u003e自此，媽媽每朝也會煲好湯水，有時甚至提早一晚預備，半夜起床四、五次設定電子煲的火力和時間，「朝早最吸收嘛，盡量朝早畀最好嘅嘢食佢囉！」看着媽媽的心機之作，沿着胃喉一點一滴地送到兒子的肚裏，家訪當天君臨也總算長回一點肉，「最近入醫院換喉有35.6公斤，咁我都安樂啲。之前醫生話佢瘦到冇肌力呼吸，希望佢繼續再肥返啦！」\u003c\/h4\u003e\n\u003ch4\u003e除了半夜抽痰和煲湯，有時聽到君臨「唧」一聲示意，楊媽媽即從睡夢中醒來，為無法活動的君臨撫平衣服，不容有一絲皺摺使他不舒服。「都『醒瞓』㗎，我個女話『唧』一聲我已經醒，我都唔知點做到。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08-1_403d66d2-37a0-4b3c-b942-16307c682f8c.png?v=1774406936\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-13.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-14.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-15.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e約朋友如天荒夜談　壓力爆煲\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e媽媽不眠不休的照顧，代價就是賠上自己的健康。大熱天時，媽媽的脖子依然披着絲巾，細心觀察，才發現她頸上長了個猶如乒乓球大小的瘤。\u003c\/h4\u003e\n\u003ch4\u003e照顧罕見病患者，非一般人能體會。壓力加上作息不定時，種種因素使媽媽患上甲狀腺亢進，還發展成良性腫瘤。心病還須心藥醫，內分泌科醫生也轉介媽媽到其他科求診，為她開導情緒。「最初都有啲抗拒，邊有時間去呢？後來都即管一試，醫生同護士見完都有安慰我，等我發洩出嚟，有人傾訴。」\u003c\/h4\u003e\n\u003ch4\u003e楊媽媽坦言，醫生處方的藥物無助她改善睡眠。她最希望能相約朋友傾訴，放鬆一下心情，但君臨出院後的狀況，又令她難以放心，「有時朝早買餸都趕住返嚟，因為擔心啲氧氣喉鬆呀、甩呀……呢啲都試過㗎喇。」由君臨出院至訪問當日，媽媽這半年全天候留在他身邊，連外出用膳也未試過。媽媽當天的午餐，只是一片塗上花生醬的麵包，有時會把煲給君臨的湯渣翻煲再吃，想與朋友「嘆個茶、食個包」，近乎天荒夜談。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-16.jpg?v=1774405314\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-17.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-18.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-19.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e聘護理員遇加價　無奈縮短時數\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e媽媽早前獲香港肌健協會短暫資助，總算能聘請護理員上門，為君臨抹身、抽痰等，減輕少許重擔，「有咩事響（抽痰）機都有人睇住，我可以落去買下餸，唔使咁擒青走返嚟呀。」縱使媽媽仍會盡量減少外出，但能在家中稍作休息，或是做一下伸展運動，對她已有莫大幫助。\u003c\/h4\u003e\n\u003ch4\u003e不過最近中介公司加價，只好縮短聘用時數，而且資助亦設期限，媽媽不禁為未來擔憂，「三萬六千蚊一個月，其實都好貴，唔係普通人負擔得起。我唔係日日都十個、十一個鐘，呢個鐘數就唔係呢個價錢㗎喇……」她考慮過退而求其次，找外傭照顧君臨，但沒有受過專業訓練的外傭，亦難以操作呼吸機、抽痰機等醫療儀器。\u003c\/h4\u003e\n\u003ch4\u003e「有時佢出唔到聲，連我照顧開都未必明佢意思係乜，更何況個姐姐呢？」對君臨來說，媽媽是最明白他的人，一個眼神、「唧」一聲的示意，媽媽已心領神會，為他處理各種問題。媽媽亦希望能親自照顧君臨，但自己體力有限，惟有向他人求助，「所以先搵Lifewire幫手，希望可以請到個護理員幫手。要廿四小時照顧佢，心理壓力好大。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-20.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-21.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e路再艱苦 彼此成為活下去的動力\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「君臨，你係咪好錫媽咪？」君臨向團隊點頭。\u003c\/h4\u003e\n\u003ch4\u003e「係咩，但叫媽咪做咁多嘢嘅，要求咁高，做死媽咪呀！」媽媽口中說着有多辛苦，但隔着口罩，仍難掩甜蜜的笑容。她一直希望能把最好的東西給予君臨，但照顧罕見病家人的壓力，令母子爭執難免。媽媽慢慢學懂放下情緒，磨擦過後會向君臨解釋自己的難處，也更珍惜二人相處的時光。\u003cbr\u003e「嗰時好緊張，樣樣都繃得好緊。以前係更加接受唔到，而家起碼放鬆少少，順其自然啦。」\u003c\/h4\u003e\n\u003ch4\u003e訪問至尾聲，夕陽從窗外映照到君臨身上。君臨住院前的心願，是和她一起遊歷更多地方，希望一家人去一次日本旅行。如今的君臨，卻連覆診也要大費周章，花近兩小時才能出門。旅行，看來只是遙不可及的奢望。\u003c\/h4\u003e\n\u003ch4\u003e「君臨，你係咪好想生存落去？」君臨瞪大眼睛，相當堅定地點頭回應。\u003c\/h4\u003e\n\u003ch4\u003e「你一日喺度，我一日都會喺你身邊照顧你。我盡能力啦，知唔知呀。」媽媽一臉慈祥地看着君臨，可感受到當初的選擇雖然艱苦，但兩母子仍會勇敢、無悔地行下去。\u003c\/h4\u003e\n\u003ch4\u003e對君臨來說，媽媽是最明白他的人，一個眼神、「唧」一聲的示意，媽媽已心領神會，為他處理各種問題，但媽媽體力有限，惟有向他人求助，「希望可以請到個護理員幫手。要廿四小時照顧佢，心理壓力好大。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-22.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-23.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-24.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-25.jpg?v=1774405313\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e請支持君臨和楊媽媽，你可以\u003ca href=\"https:\/\/www2.lifewire.hk\/products\/online-donation\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e一筆過捐助\u003c\/span\u003e\u003c\/a\u003e或\u003ca href=\"https:\/\/www2.lifewire.hk\/pages\/how-to-donate\"\u003e\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e每月捐款\u003c\/span\u003e\u003c\/a\u003e，支撐他們走到生命盡頭。\u003c\/h3\u003e\n\u003cstyle\u003e\n            .adaptive-table {\n            background-color: red; \n            color: white;\n            border-collapse: collapse;\n        }\n        .adaptive-table th, .adaptive-table td {\n            border: 1px solid white;\n            padding: 8px 12px; \n            text-align: center;\n            height: auto;\n        }\n.adaptive-table th:first-child, \n        .adaptive-table td:first-child {\n            background-color: #333;\n           width: auto;   \n            white-space: nowrap;  \n            vertical-align: middle;\n        }        \n        .adaptive-table th:nth-child(2), \n        .adaptive-table td:nth-child(2) {\n            background-color: #ccc;\n            color: #333;\n        }\n    \u003c\/style\u003e\n\u003ctable class=\"adaptive-table\" height=\"73\" style=\"width: 98.9658%; height: 304px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003cth style=\"height: 30.15px; width: 53.6771%; text-align: center;\"\u003e\u003cbr\u003e\u003c\/th\u003e\n\u003cth style=\"height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4 style=\"text-align: left;\"\u003e\u003cspan\u003e每月預算開支\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/th\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003ctd style=\"text-align: right; height: 30.15px; width: 53.6771%;\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e    護理員\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4 style=\"text-align: left;\"\u003e$8,000 - $40,000 不等\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003ctd style=\"text-align: right; height: 30.15px; width: 53.6771%;\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e覆診車費\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"text-align: left; height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4\u003e$2,000\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003ctd style=\"text-align: right; height: 30.15px; width: 53.6771%;\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e營養奶\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"text-align: left; height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4\u003e$2,500\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003ctd style=\"text-align: right; height: 30.15px; width: 53.6771%;\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e湯料、益生菌及營養補充品\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"text-align: left; height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4\u003e$3,000\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 30.15px;\"\u003e\n\u003ctd style=\"text-align: right; height: 30.15px; width: 53.6771%;\"\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e尿片芯、護理尿床墊\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd style=\"text-align: left; height: 30.15px; width: 46.2733%;\"\u003e\n\u003ch4\u003e$300\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\n\u003cbr\u003e採訪、撰文：蕭愷智、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea、Ken Mok\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e生活照由受訪者提供\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"楊君臨","offer_id":43243484577910,"sku":null,"price":290.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3620-00.jpg?v=1774345463"},{"product_id":"長不大的小飛俠-蕭曉進","title":"長不大的小飛俠 - 蕭曉進","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/EQSI88VN6D0\" title=\"【#透視罕見病】黏多醣症(一) 長不大的小飛俠 勇抗退化惡疾\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「佢哋笑我小矮人……冇人同我做朋友……」\u003cbr\u003e「我想爬上去！我要爬！」\u003cbr\u003e他咬緊牙關嘗試攀上滑梯，用盡力氣卻仍然停留在起點……\u003c\/h4\u003e\n\u003ch4\u003e他，胸骨凸起、雙手變形無力、雙腳呈O字，旁人嘲笑他是「小矮人」，其實他是另一個童話故事的主角──小飛俠。\u003c\/h4\u003e\n\u003ch4\u003e因着體內的黏多醣一直累積，他如小飛俠Peter Pan一樣長不大，縱然如此，他卻有着樂觀及熱心助人的個性，憑着無畏無懼的冒險精神，征服一場艱巨的人生旅程。\u003c\/h4\u003e\n\u003ch4\u003e他，是黏多醣症四型患者──蕭曉進。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-01.jpg?v=1774409878\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-02.jpg?v=1774409878\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-03.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/p\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003e\u003cimg alt=\"\"\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e「細細粒」的曉進愛跑、愛跳、愛爬，但走路時彎着的雙手無力地擺動，加上其凸出的胸骨，常惹來旁人的奇異目光……種種的「與眾不同」，源於他患上罕見病──黏多醣症第四型。\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e7歲卻僅92厘米身高，曉進看上去如2歲孩子般，「佢2、3歲到宜家都係高咗兩公分（厘米），高得好慢。隨住年齡增長會影響內臟，因為內臟會正常發育，但佢骨骼唔高會壓住啲心肝……」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e雙手無力 靠牙咬\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「佢開始平扁腳、開始O型，行路容易攰、容易跌倒。」由於曉進體內一直累積黏多醣，不但腿部骨骼變形，連眼角膜也受影響，「佢應該有300度近視，200度散光，（看東西）比正常人矇好多，睇嗰時要睇得好埋。」難怪小小的臉蛋，已架上厚厚的眼鏡。\u003c\/h4\u003e\n\u003ch4\u003e不過，最直接影響曉進日常生活的，卻是他那雙無法伸直的小手。小編遞上一包糖，曉進即把整袋塞進口，原來小小的一個包裝袋，其雙手也不夠力撕開，只能靠牙咬破。「手腳同胸骨已經開始惡化，以前冇咁彎，宜家彎得好犀利。手骹開始冇力，耷落去。寫字、着衫着鞋着襪嗰啲日常嘢都有影響。」曉進媽媽幽幽地道出兒子的日常。\u003c\/h4\u003e\n\u003ch4\u003e拆開零食包裝袋、拿起餐具……這些看似簡單的動作，對曉進來說，卻是耗盡氣力也未必能做到；更遑論他跌倒後，可以出力撐起自己，重新站起來。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-04.jpg?v=1774409878\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-05.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「瞓覺諗下都會喊」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「醫院醫生都未識呢個病， 佢喺嗰間醫院應該係首例。」曉進出世不久，家人已發現其胸骨凸出，但一直未有理會；直到曉進2歲半，手腳開始變形、停止長高，家人始帶他中港兩邊走，誓要揪出病因……\u003c\/h4\u003e\n\u003ch4\u003e最終確診患上黏多醣症，惟已是四年後的事，「成家人都好傷心，好徬徨，好難平復。我哋初時知道都喊咗好耐，瞓覺嗰陣諗下諗下都會喊。」\u003c\/h4\u003e\n\u003ch4\u003e難過，卻要努力抑壓，深怕臉上的淚水成為曉進奮戰病魔的絆腳石，「我哋唔會喺佢面前講佢，唔會喺佢面前喊，好似正常生活咁。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-06.jpg?v=1774409878\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-07.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e錯失用藥黃金時期\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e惟旁人的窩心問候，卻令媽媽心酸，「有啲人關心下進進，我自己心裏都好心痛。我哋好堅強咁去照顧佢，唔會話……」靜默了數秒，雙手掩面的媽媽，再說不出半句。\u003c\/h4\u003e\n\u003ch4\u003e雖然外國有人工酵素可減慢曉進的退化，但年逾百萬的藥費絕非一般家庭能負擔；幸在病患家屬努力爭取下，有關酵素終被醫管局納入藥物名冊，曉進更於去年11月首次試藥，「宜家申請到都放下心頭大石。」\u003c\/h4\u003e\n\u003ch4\u003e可惜的是，曉進已錯過用藥的黃金時期，意味已退化的部位永遠不能康復，「如果當時早啲有、早啲打（注射酵素），就冇變形得咁犀利。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-08.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-09.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e盼戰勝「20歲魔咒」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e前年，曉進接受了一個高風險的頸椎手術，令媽媽擔心不已，「頸椎要控制大腦同手腳，醫生驚小朋友玩呀跌倒，壓到神經線會令佢癱……但主要神經線喺條頸到，如果有乜差錯都好麻煩。」慶幸手術成功，曉進的康復進度亦相當理想。\u003c\/h4\u003e\n\u003ch4\u003e但想到曉進的未來，作為母親又怎能放心，「始終我哋都會老，我哋唔喺到佢會點生活呢？」\u003c\/h4\u003e\n\u003ch4\u003e文獻顯示，一般黏多醣患者的壽命約20年，惟媽媽寧願相信奇蹟會降臨曉進身上，「唔去諗佢壽命有幾長，或者我心入面諗住有奇蹟出現，過咗20歲，仲有30歲、40歲。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-10.jpg?v=1774409878\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-11.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「冇人同我做朋友！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「用好多心機照顧佢，樣樣親力親為幫佢。」上學放學、換衫、吃飯、去洗手間，曉進在多方面均不能缺少家人幫助，尤其是他活躍的個性，每次到公園總不停的跑跑跳跳，媽媽只能全天候戒備，「唔放心佢同啲小朋友玩，玩嗰陣會有碰撞，所以要睇緊佢，驚佢跌倒會影響手術後嘅復合位。」諷刺是，又有幾個小朋友，願意跟兒子玩耍？！\u003c\/h4\u003e\n\u003ch4\u003e「佢哋笑我小矮人！冇人鍾意同我玩！冇人同我做朋友！」叫媽媽費神的，還有兒子的弱小心靈，「有時啲小朋友笑佢長唔高，佢走嚟同我講，我會解釋畀佢聽，人哋唔知，唔好怪人哋。佢會傷心，返屋企喊，覺得自己冇朋友。」\u003c\/h4\u003e\n\u003ch4\u003e採訪當日，當我們與曉進談及「朋友」話題時，原本嘻嘻哈哈的他隨即繃着臉，眼眶紅紅的依偎在媽媽背後，眼淚大顆的掉進媽媽的肩膀，逃避這個觸動着神經的「死穴」。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-12.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-13.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e讀特殊學校增信心\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e還幸他性格樂觀，更學懂保護自己，「佢同人玩會話『我有病㗎，唔好蝦我、唔好推我。』」惟媽媽更希望他學懂積極面對，「我教佢雖然你有病，但你要積極啲，唔好話你有病就個個都遷就你。」\u003c\/h4\u003e\n\u003ch4\u003e「佢有啲自卑，升小一嗰陣羨慕同學仔讀正常學校，我話你唔得㗎……」當日選擇為曉進入讀特殊學校，一度令他難受，但回首當初，媽媽堅信這是個對的決定，「去到特殊學校我話『你見啦，有好多小朋友坐輪椅，你會行會走，到你照顧坐輪椅嘅小朋友。』佢返嚟會講老師又話我默書點呀、讀書讀得好呀、攞咗幾多星星；有時又話成班同學得我一個識，好有自信心，返學開心番好多。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-14.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-15.jpg?v=1774409879\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e關心就是治療良方\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「有時走埋嚟錫下你，有時講啲嘢哄下你，嗰陣就唔記得有幾辛苦，見到佢咁開心都覺得安慰。」曉進年紀雖輕，有時卻比成年人細心，「有時佢都幾識諗，知道你病就唔使你抱。好似宜家返學嗰度整扶手電梯，佢話好想過埋（去年）12月，工程完咗就唔使兜咁遠行、唔使我哋辛苦。」\u003c\/h4\u003e\n\u003ch4\u003e偶然的頑皮雖令媽媽激心，但曉進每一個窩心舉動，都叫媽媽充滿着撐下去的動力，「最想佢好似正常小朋友咁長高，希望社會關注呢個罕見病，唔好歧視，畀多啲資源佢哋。佢哋都好想得到社會嘅關注、關心同埋幫助。」\u003c\/h4\u003e\n\u003ch4\u003e簡單的接納和關心，已是罕見病童「最直接的治療」。\u003c\/h4\u003e\n\u003ch4\u003e你……願意少一點歧視，多一點關愛嗎？\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：黏多醣症是甚麼？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e黏多醣症全名為黏多糖貯積症（Mucopolysaccharidoses，簡稱MPS），是一種罕有先天性新陳代謝異常的疾病。 黏多醣是一種長鏈複合糖分子，是構成人體組織和器官的主要成份。而黏多醣症的患者不能像普通人一樣，產生能分解黏多醣的酵素，令黏多醣不斷累積，影響細胞的正常功能，破壞體內器官包括心臟、骨骼、關節、呼吸道系統及神經系統等。 黏多醣症分為一、二、三、四、六、七及九型共七種型號，主要根據缺少分解某種黏多醣的酵素和所表現出的症狀來劃分。雖然不同型號的臨床徵狀不同，但大部份患者多會經歷一段正常發展，但身體和心理功能其後慢慢惡化；而黏多醣症患者一般活不過20歲。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cstyle\u003e\n    .adaptive-table {\n        background-color: red; \n        color: white;\n        border-collapse: collapse;\n        width: auto;\n        margin: 0 auto;\n    }\n    .adaptive-table th, .adaptive-table td {\n        border: 1px solid white;\n        padding: 8px 12px; \n        text-align: center;\n        height: auto;\n        vertical-align: middle;\n    }\n    .adaptive-table tr:first-child th {\n        background-color: #333;\n        white-space: nowrap;\n    }\n    .adaptive-table tr:not(:first-child) td {\n        background-color: #ccc;\n        color: #333;\n    }\n\u003c\/style\u003e\n\u003ctable class=\"adaptive-table\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003cth\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e病型\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/th\u003e\n\u003cth\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e亞型\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/th\u003e\n\u003cth\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e病因\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/th\u003e\n\u003cth\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e估計發病率\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/th\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 一型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 1-H型（Hurler綜合症）\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺乏alpha-L- Iduronidase 酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每10萬人中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 1-HS型\u003cbr\u003e（Hurler-Scheie 綜合症））\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺乏alpha-L- Iduronidase 酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每10萬人中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 1-S型（Scheie 綜合症）\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺乏alpha-L- Iduronidase 酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每10萬人中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e 二型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 2A型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少 iduronate sulfatase 酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每10萬-15萬名男性中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS 2B型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少 iduronate sulfatase 酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e通常在2至4歲期間發病\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e三型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少分解 heparan sulphate 的酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每2.4萬至7萬人中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e四型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少分解 keratan sulphate 的酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每20萬人中有2-3人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e六型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少分解 dermantan\u003cbr\u003e的酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每21.5萬千人中有1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e七型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少beta-glucuronidase酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e約每25萬人中少過1人\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch4\u003eMPS\u003cbr\u003e九型\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\u003cbr\u003e\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e缺少hyaluronidase酵素\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003ctd\u003e\n\u003ch4\u003e全球只有一宗病例\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e資料來源：香港黏多醣症暨罕有遺傳病互助小組\u003c\/h4\u003e\n\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/cXwE7Eu52qQ\" title=\"【關懷罕病童】 師生齊送暖\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e早前，寶覺中學的一眾師生在觀看曉進的個案後深受感動，決定自發為他寫上心意卡打打氣！以一筆一劃刻上祝福及打氣說話，並交由我們代為轉交予曉進。\u003c\/h4\u003e\n\u003ch4\u003e收到心意卡的曉進看畢後馬上展露燦爛笑容，希望藉著以下影片向一眾哥哥姐姐送上謝意，更大唱「一雙手」，勉勵大家無畏無懼，握緊拳頭去克服難關！\u003cbr\u003e除了捐款支援，一眾病童更需要大家的關懷和理解，希望大家都能透過不同方式表達對罕見病童們的關注！\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-16.png?v=1774409880\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-17.png?v=1774409879\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e","brand":"Lifewire HK","offers":[{"title":"蕭曉進","offer_id":43225935413366,"sku":null,"price":280.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3601-00.jpg?v=1774407830"},{"product_id":"雷特氏症-不治症女兒-史家恩","title":"Daughter with incurable disease - Ka Yan","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/D7XgDSOZ0XU\" title=\"【#透視罕見病】雷特氏症(一) 不治症女兒 日復日退化 　媽媽：等你說愛我\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eThe rare disease “Rett Syndrome” is caused by mutations in the congenital gene MECP2. \u0026nbsp;It is a neurological disease that seriously affects children’s psychomotor development. \u0026nbsp;It cannot be prevented and there is no effective treatment.\u003c\/h4\u003e\n\u003ch4\u003eKa Yan:\u0026nbsp; I remember that you were born fat, so cute, and so healthy... Suddenly one day, everything was changed up-side-down.\u0026nbsp; Doctor said that you have Rett Syndrome and you will degenerate gradually, and eventually you will not know how to call mom...\u003cbr\u003e\u003cbr\u003eOver twenty years, mom did not ask for more.\u0026nbsp; Mom would only want you to eat properly, take a shower, and then go to bed.\u0026nbsp; But, these are not easy and out of reach.\u0026nbsp; However, no matter how hard and how difficult it is to take care of you, how tired it is, I am willing to continue to do so, because you are my favorite daughter that I love most...\u003c\/h4\u003e\n\u003ch4\u003e\u003cem\u003eMother loves you\u003c\/em\u003e\u003c\/h4\u003e\n\u003cp\u003e———————————————————————————————————————————————————\u003c\/p\u003e\n\u003ch4\u003e\"Naughty! Naughty! Hehe...\" Ka Yan mummering (23 years old) who often chants always has a smile on her face. \u0026nbsp;She keeps rubbing her hands, sits unsteadily and can't stand still, but she is still shaking and unable to balance walking around. \u0026nbsp;Even her mother (Helen) couldn't stop. \u0026nbsp;“For Rett Syndrome, Ka Yan’s situation is considered as mild because at least she knows how to walk and she knows how to eat...”\u003c\/h4\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eI looked at my mother but called my brother\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“Around 2 and a half to 3 years old, Ka Yan suddenly lost her speech.\u0026nbsp; What she used to say, she totally forgot.\u0026nbsp; She call mom as brother and sister.\u0026nbsp; It seemed like a mess.”\u0026nbsp; Besides of losing her speech capability, her mobility also gradually disappeared.\u0026nbsp; She constantly rubbed her hands... We consult with doctor, have all kind of gene tests, blood tests. \u0026nbsp;It took totally two full years before she was finally diagnosed suffering from Rett Syndrome. \u0026nbsp;“I am lost and confused. \u0026nbsp;I have no knowledge on such a disease.\u0026nbsp; Is there any medicine to cure such disease? \u0026nbsp;Could this be cured?\u0026nbsp; There are lots of unknown.\u0026nbsp; It is so helpless.”\u003cbr\u003e\u003cbr\u003e“Why me?\u0026nbsp; There is only one case among twelve thousand people and I have it.”\u0026nbsp; It’s disappointed and overwhelming.\u0026nbsp; The family was like towards a dead end.\u0026nbsp; My mother recalled how helpless it was at the time.\u0026nbsp; “If there are any possible ways even it costs $3,000 for a treatment, I will still buy it for her.\u0026nbsp; Until we know that there is no medicine to cure this disease, we eventually did not bother to look for ways for treatment.”\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eMom and dad keep watching overnight\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDay after day, Ka Yan’s condition has not made progress, but degeneration has become more and more obvious, such as hunchback, scoliosis, and flat feet. \u0026nbsp;“Ka Yan walks really slow these days.\u0026nbsp; Sometimes it is really difficult to hold her walking slowly.\u0026nbsp; If we need to commute in a long way, we use her wheelchair.”\u0026nbsp; She keps rubbing her hands and can’t sit still. \u0026nbsp;Ka Yan also needs to feed three meals a day. \u0026nbsp;Mom even needs to raise her foot to press Ka Yan's thighs while feeding so as to avoid her uninterrupted standing.\u003c\/h4\u003e\n\u003ch4\u003e“My husband and I have to work overnight!”\u0026nbsp; One of the symptoms of Rett Syndrome is that it only requires a nap time, the kindness of the \"unwanted\" sleep, Ka Yan will fool around, eg. “I want to pee!” “I want to go to the toilet!” “I want to...”\u0026nbsp; Dad and mom have to take shifts to take care of her.\u0026nbsp; “Each of us take a few hours sleep and take turn to keep an eye on Ka Yan as sometimes she will go to the toilet to play with water.”\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3123-01.jpg?v=1774418004\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3123-02.jpg?v=1774418005\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3 class=\"h3-lifewire\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003e20 seconds slower to receive instructions\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eOthers felt very tired even just by watching their life. \u0026nbsp;Dad and mom are of course exhausted. \u0026nbsp;During interview, Ka Yan would often rush to the editor and recite some words or sentences. \u0026nbsp;She actually only tried to respond to the editor’s question about “the situation has changed.” \u0026nbsp;Mom is accustomed to these response: “If you ask her to drink water, she ignored you.\u0026nbsp; But she will walk over 20 seconds later.\u0026nbsp; It is because there is a 20 seconds delay on her response to instructions.\u0026nbsp; She is then now received your instruction asking her to drink water.”\u003cbr\u003e\u003cbr\u003eThe biggest powerlessness challenge is her “quicksand” type of learning ability. \u0026nbsp;“After you teach her, she will forget it. \u0026nbsp;If you teach her again, she will remember and do it.\u0026nbsp; Then she will not remember it again.\u0026nbsp; It happens so repetitively. \u0026nbsp;Psychologically difficult and hurt much. \u0026nbsp;It’s sad to see the progress and regress again!”\u003c\/h4\u003e\n\u003ch4\u003eIt's bitter but I will keep going! \u0026nbsp;Mother was worrying about certain situation but luckily that did not happen. \u0026nbsp;“If I give birth to a second child, will there be any problems (ie. Have the same disease)? \u0026nbsp;But I see that other families have no similar problems with their second child. \u0026nbsp;It should not be hereditary. \u0026nbsp;Without much thought, just try again.” \u0026nbsp;Eight years ago, little sister On Kei was born safely but there was another situation happened.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eOutburst of anger - mother and daughter fight against each other\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“When having little sister during pregnancy, it’s very hard.\u0026nbsp; We need to take care of Ka Yan at all time.\u0026nbsp; Basically has no energy to take care of her.”\u0026nbsp; But what was the worst was Ka Yan felt that mommy has been taken away by her little sister, and the jealousy hidden in her deepen heart was on the verge of her anger.\u0026nbsp; “As soon as she sees the younger sister, she will hit her.\u0026nbsp; She will hit her whenever they come across.\u0026nbsp; She once tried to hit her younger sister so hard that the little sister was thrown into the bathroom!”\u003c\/h4\u003e\n\u003ch4\u003eEnvy and adolescence, Ka Yan showed all kinds of uncooperativeness. \u0026nbsp;“Don’t go back home.\u0026nbsp; Want to leave when she reaches home.\u0026nbsp; Tried to drag her in.\u0026nbsp; She will lose her temper and beat us, beat her younger sister.\u0026nbsp; Did not go to bed. \u0026nbsp;Did not eat even you feed her.\u0026nbsp; Help her to do some exercises and she refused to do so.” \u0026nbsp;Mommy couldn’t help but erupt, “At that time, I felt that I had taken good care of her. \u0026nbsp;Why she behaved in such a way? \u0026nbsp;We fight against each other.\u0026nbsp; I hit her.\u0026nbsp; She beated me.” \u0026nbsp;Eventually, a social worker warned Helen if Helen hit Ka Yan again he will call the police. \u0026nbsp;At that time, we found that Ka Yan has violent tendency and she has arranged to stay in the dormitory.\u003cbr\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eFeel loved – that breaks the cocoon and untie the knot\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eAfter Helen calmed down, she realized she must lower herself in order to untie the knot in Ka Yan’s heart.\u0026nbsp; “Change my own mentality, change the way we get along with her.\u0026nbsp; Show her more love, more hug, more accommodating, sometimes deliberately, just hug her as we see her.\u0026nbsp; Slowly, Ka Yan feels again we love her.\u0026nbsp; Sometimes we deliberately get along with her alone to let her feel that mommy is belonging to her.”\u003c\/h4\u003e\n\u003ch4\u003eMother sees through that her daughter is actually unable to express her inner discomfort.\u0026nbsp; “Rett Syndrome seems like a cocoon being bound inside. \u0026nbsp;It’s very hard and difficult if the situation could not be released. \u0026nbsp;We don’t understand her.\u0026nbsp; That’s why she feels very hard and difficult and it is the same for us.” \u0026nbsp;Mother holds tight with Ka Yan and deconstruct the difficulties of Rett Syndrome without sullenness.\u003cbr\u003e\u003cbr\u003eAfter Helen and Ka Yan fixed the relationship, Ka Yan also let go of her hostility towards her younger sister.\u0026nbsp; She didn't hit her sister again but care more.\u0026nbsp; “Shi On Kei, go to school yet?”\u0026nbsp; She always said this.\u0026nbsp; Helen also strives for the opportunity to solely get along with Ka Yan.\u0026nbsp; Although she was suffering from breast cancer three years ago, she still insisted on cooking by herself for her daughter who returned home from the dormitory.\u003cbr\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eEstablish an association to help fellow patients\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHelen recalled the early stage of Ka Yan’s illness. \u0026nbsp;Helen didn't take Ka Yan out to meet with relatives and friends for two \/ three years just to avoid questions that she didn't even know the answers. \u0026nbsp;“why didn’t know how to write? \u0026nbsp;Don’t even know how to eat? \u0026nbsp;What you have been doing\/how you take care of her? … Even some relatives said: “the mad woman is coming!” I was so unhappy at that time. \u0026nbsp;But there was no way because Ka Yan doesn’t know how to communicate with other people.”\u003c\/h4\u003e\n\u003ch4\u003e“We already accepted all these facts after more than 20 plus years.”\u0026nbsp; As a person who came by, Helen understood that the parents of children with Rett Syndrome would always feel isolated, helpless and hopeless.\u0026nbsp; So, Helen participated and established the Hong Kong Rett Syndrome Association.\u0026nbsp; She hopes members could exchange their experiences and help each other.\u0026nbsp; “New parents have a lot of questions.\u0026nbsp; We can share our experience with them and hope this could help them learn and go through this process more smoothly, because accepting, facing, and resolving, all require a process.”\u003cbr\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eLooking forward to legislation to help patients with rare diseases\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHelen said frankly that Rett Syndrome is temporarily incurable. \u0026nbsp;Although foreign countries are developing drugs to treat Rett Syndrome and are about to enter the third phase of trials. \u0026nbsp;But, “the medicine is very expensive. \u0026nbsp;It may cost about 2 million a year.\u0026nbsp; How could a grassroot family afford it.”\u003c\/h4\u003e\n\u003ch4\u003eTherefore, Helen hopes that the government can define and legislate on rare diseases so that patients with rare diseases can receive proper medical assistance. \u0026nbsp;“If Rett Syndrome drugs are introduced in the future, I hope the government can approve them for all the patients.”\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eMusic therapy to relieve the condition\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDrugs for the treatment of Rett Syndrome is not developed\/available. \u0026nbsp;Patients can only rely on other drugs to relieve and control the condition. \u0026nbsp;“If there is any cramps, patients can take cramp medicine.\u0026nbsp; If patients have breathing difficulties, they can take respiratory relief medicine. \u0026nbsp;If patients can’t sleep, they can take sleeping pills.\u0026nbsp; If they are in bad mood or hit someone, they will just take psychiatric drugs.”\u003c\/h4\u003e\n\u003ch4\u003eBesides of these kind of short term treatment, Helen said that different rehabilitation treatments, such as physical therapy, speech therapy or music therapy, could be used to maintain the patient’s mobility and slow down the deterioration.\u0026nbsp; “(Ka Yan) heard the music would help her soothing, and if I ask you to cooperate with exercises and meals, it works.\u0026nbsp; If there is no music, I can't get her to do it!”\u0026nbsp; However, each session of rehabilitation treatment costs about $700.\u0026nbsp; Helen hopes that the public could learn more about Rett Syndrome.\u0026nbsp; Through fundraising, we could help some patients with Rett Syndrome to cope with the cost of intensive rehabilitation training.\u0026nbsp; “Keep their physical mobility and keep it from deteriorating.\u0026nbsp; The worse it is, the more difficult it will be for us to take care of them.\u0026nbsp; If they can sit and walk on their own, it would be much easier for us to take care of them.”\u003cbr\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eHope to set up a home and help each other\u003c\/span\u003e\u003c\/strong\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eAccording to the study, the average life expectancy of Rett Syndrome's patients is around 20 to 30 years old, but there are also cases of living up to 50 years old who are still alive. \u0026nbsp;Helen did not deny that the most worrying thing is the parents are getting old and passing away while their children are lack of care and no one take care of them. \u0026nbsp;Helen hopes that a Rett Syndrome’s home could be setup for the patients in the long run. \u0026nbsp;“Our children are all severely disabled and mentally handicapped. \u0026nbsp;If there are homes special for Rett Syndrome and could be managed by parents and siblings with relevant experience and all helpers are within the same circle who know well of their symptoms and behaviours, it would be much easier for taking care of them and parents would be with much ease of mind.”\u003c\/h4\u003e\n\u003ch4\u003eThe road to recovery for patients with Rett Syndrome is really long and full of uncertainties... Are you willing to lend your helping hands and help them by making some contributions?\u003cbr\u003e\u003c\/h4\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eUnderstanding rare diseases: What is Rett Syndrome？\u003c\/span\u003e\u003c\/h3\u003e\n\u003cp\u003eThe rare disease \"Rett Syndrome\" is caused by mutations in the congenital gene MECP2. \u0026amp;nbsp;It is a neurological disease that seriously affects children’s psychomotor development. \u0026amp;nbsp;It cannot be prevented and there is no effective treatment. \u0026amp;nbsp;The incidence of Rett Syndrome is 1 in 10,000 to 1 in 12,000, and it commonly occurs in girls. \u0026amp;nbsp;The sick child develops normally in the first 6 to 18 months after birth, but then quickly degenerates and develops slowly, such as mental decline, loss of language and physical motor skills, movement control disorders, autistic behavior, cerebral palsy, and even limb atrophy and deformation, etc.\u003c\/p\u003e\n\u003cp\u003eThe main symptoms: constantly rubbing hands, loss of language ability, epilepsy, dysplasia, scoliosis, constipation, sleep disturbance, and inability to take care of yourself.\u003c\/p\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"Ka Yan","offer_id":43226286588022,"sku":null,"price":270.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3123-00.jpg?v=1774412007"},{"product_id":"容易脫骹的-小丸子-白晞佑","title":"容易脫骹的「小丸子」 - 白晞佑","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】容易脫骹的「小丸子」：「我想做開心人！」\" src=\"https:\/\/www.youtube.com\/embed\/uJK9ISs4FDk\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e容易脫骹的「小丸子」：「我想做開心人！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e四歲，經歷三次手術；\u003cbr\u003e脫骹、手術，脫骹、手術…卻又重返原點；\u003cbr\u003e全因她得了無法根治的「發展性髖關節發育不良」\u003cbr\u003e這小天使卻總笑着說：\u003cbr\u003e「No喊！」「No痛！」「我要好返！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-01.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-02.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e「我係白晞佑，今年4歲，我讀幼班。」\u003cbr\u003e「我想做開心人！」\u003c\/h4\u003e\n\u003ch4\u003e影像回到去年聖誕探防兒童醫院，Lifewire第一次遇上晞佑，其「小丸子」的髮型、瞇成腰果的雙眼、響徹病房的笑聲……記憶猶新。然而，這「開心人」的臀部及雙腿包了石膏，雙腿向外彎成O型，走起路來像小鴨；印象更深。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-03.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-04.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「鴨仔咁行」 脫臼無法根治\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e晞佑一歲學行時已「鴨仔咁行」，當時醫生答是「情況正常」；歲半時，狀況跟同齡小朋友差距越來越遠，爸爸再求助私家醫生，才確診此症。\u003c\/h4\u003e\n\u003ch4\u003e「最初唔相信佢有呢種病，亦無咁嘅知識同概念。」這種罕見病，連醫生都無法告知治療方案，更甚是，醫生坦言脫臼不只發生在腳上，將來或會出現在其他關節上，他們能做的，就只是「頭痛醫頭，腳痛醫腳」，既不知何時會突然病變，也沒有徹底醫治的方案。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-06.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-07.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e無間手術 總是重返原點\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e手術雖完，可是戰鬥路卻沒盡頭。\u003cbr\u003e手術中，醫生將骨與骨之間的縫合位置抓緊，情況一度不錯；惟再照X光片時，竟發現髖關節又再鬆弛，原來是關節位出現「ERROR」，令骨與骨之間不能貼服縫合；如是者，晞佑進行了第二次、第三次手術。\u003c\/h4\u003e\n\u003ch4\u003e「好似玩飛行棋，擲骰三次六，就要返回原點，重新嚟過」。醫生束手無策，亦表明沒可能斷尾；Hankel直言也感無力，做甚麼也像徒然，「唔知幾時發生，唔知幾時會完。」Hankel只能自責，「點解只信一位醫生，點解我唔去盡責，問多啲人或做多一步。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-05.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-08.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/p\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eNo喊！No痛！ 我要好返！\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「No喊！」、「No痛！」、「晞佑叻叻！」有力的童言、無力的感覺；出自這小女孩口中，可愛、也叫人憐惜。被問及「腳仔痛唔痛」，這個小小冬菇頭總是斬釘截鐵的「No！」堅強得令人心疼。\u003c\/h4\u003e\n\u003ch4\u003e但偶爾，她也會指着手術後的疤痕撒嬌，爸爸便答這是一個印證，證明她的堅強。晞佑總回復信心：「叻叻，我要好返！我要好返！」\u003c\/h4\u003e\n\u003ch4\u003e四歲的小孩受盡病症折騰，在冰冷的手術刀下陪伴成長；惟展露的卻是暖暖的笑容、滿滿的正能量；爸爸欣慰地表示，正是女兒的笑容，喚醒了活在當下的平常心，「係啊，個關口要過，咁咪過囉！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-09.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-10.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e一家四口 二人長期病患\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e咬着牙關撐下去本已不易，同樣令Hankel擔憂的，還有太太。晞佑媽媽患有「多發性硬化症」 ( Multiple Sclerosis , MS )，是一種中樞神經系統（腦部及脊髓）的疾病，其左邊手腳乏力，難以照顧及抱起子女。處理日常家務雖沒大問題，但常出現短期記憶，就算是家附近常出沒的地方，也會認不了路；故當Hankel不在家時，媽媽只能和子女留在家中，不敢上街。\u003c\/h4\u003e\n\u003ch4\u003e為了照顧家庭，Hankel只得放棄全職工作，以自由身性質接洽設計工作，「我都試過做全職，但照顧唔到晞佑，又辛苦咗太太，影響埋佢嘅病情……」\u003c\/h4\u003e\n\u003ch4\u003e沒穩定收入，縱使可獲政府傷殘津貼，惟手術費動輒又數萬至十萬，第一次手術時已傾盡積蓄，當得知還要施第二次手術時，「係晴天霹靂，因為我哋根本冇晒錢，即係乾塘！」迫在眉睫，唯有硬着頭皮向親友眾籌度日，「其實很難，問了一次，就唔可以問第二次。」辛苦賺得一點收入，隨即又要歸還親友，令生活艱難竭蹶，捉襟見肘。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-11.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-12.jpg?v=1774420556\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e唔要做偉人 只要健康快樂\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e由於晞佑待在醫院的時間較多，亦不能如一般孩子自由跑跳，Hankel擔心會影響其認知和社交能力，故在身體許可的情況下，盡量安排女兒上學。「我唔係要佢做偉人，只要健康、快樂，就係咁簡單！」\u003c\/h4\u003e\n\u003ch4\u003e「爸爸，Thank You! I Love You!」晞佑天使般的笑容，就是爸爸最大的回報。生命沒既定軌跡，只要家人陪伴，再難過的關口，都有走下去的理由！\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-13.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-14.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-15.jpg?v=1774420555\"\u003e\u003c\/p\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u003cimg alt=\"\"\u003e\u003c\/p\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e我們是快樂的好兒童\u003c\/span\u003e\u003c\/h3\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e晞佑就讀於九龍城浸信會幼稚園，這天 Lifewire 團隊獲安排採訪，只見晞佑表現開朗，還主動幫其他小朋友，上英文課時尤其主動。\u003c\/h4\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch4\u003e班主任高老師形容：「晞佑好少扁嘴或者唔開心。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u003cimg alt=\"\"\u003e\u003c\/p\u003e\n\u003ch4\u003e校長羅慈惠女士形容她的性格充滿喜樂，「將正能量帶返畀我哋學校。」\u003c\/h4\u003e\n\u003ch4\u003e羅校長表示：「晞佑因長期住院，很多反應和說話技巧都未能達到同齡小朋友的標準。」她希望幫助晞佑逐步跟上，也鼓勵她和父母參加生日會等活動，感受團體氣氛；她唯一心痛晞佑未能參與正常體能活動，期望她能盡快康復。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-16.jpg?v=1774420555\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e冀社會關注罕病人士\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e高老師常一手拖着晞佑，一手拿着咕，「晞佑坐嘅時候，有咕墊着會冇咁辛苦。」\u003c\/h4\u003e\n\u003ch4\u003e面對晞佑的情況，學校全力支援，更安排關顧小組了解其學習進度，務求令她融入學習環境。\u003cbr\u003e「相信有部份人對他們抱有歧視，覺得佢哋阻住或麻煩。」羅校長寄望更多人關注罕見病患者，呼籲大家給病者一個微笑、揮手點頭或讓座，已是對他們莫大的鼓勵與支持。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-17.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-18.jpg?v=1774420555\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪、撰文：鄭宇丹、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea (部份相片由受訪者提供)\u003cbr\u003e影片製作：Lifewire、Ken Mok、Sea.Pho.Yea\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e—————————————————————————————————————————————————————\u003c\/p\u003e\n\u003cp\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e2021年3月更新\u003c\/span\u003e\u003c\/p\u003e\n\u003ch4\u003e患「發展性髖關節發育不良」的晞佑，1月中再次走進手術室！因關節發展未能覆蓋患處周邊，做過手術的位置 (尤其後方近盤骨) 仍有空隙，加上本身發育不良影響，醫生認為將來仍有鬆脫的風險！\u003c\/h4\u003e\n\u003ch4\u003e這次手術，將未覆蓋後方的位置「重置」，令患處維持在最佳位置，讓晞佑日後於更鞏固的基礎上成長。爸爸Hankel：「醫生可做的都已做，之後就要看晞佑了！」\u003c\/h4\u003e\n\u003ch4\u003e一次又一次的手術，這位可愛「開心人」一如既往勇敢面對，繼續「No喊、No痛、我要好返！！」\u003cbr\u003e請大家繼續支持晞佑小妹妹，希望她早日康復，「No甩骹！」「Delete」未來的擔憂！\u003c\/h4\u003e\n\u003ch4\u003e請大家參與\u003cspan style=\"color: rgb(0, 170, 255);\"\u003e\u003ca style=\"color: rgb(0, 170, 255);\" href=\"https:\/\/lifewirehk.typeform.com\/to\/dqq6Aw?typeform-source=www2.lifewire.hk\"\u003e每月捐款\u003c\/a\u003e\u003c\/span\u003e，支持晞佑的長期醫療需要。\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_cfac74b5-9501-479b-a4b0-da4b0595e199.png?v=1780458380\" style=\"display: block; margin-left: auto; margin-right: auto;\"\u003e\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":"白晞佑","offer_id":43243484971126,"sku":null,"price":260.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3609-00.jpg?v=1774419025"},{"product_id":"小腦萎縮青年-曾錦源","title":"小腦萎縮青年 - 曾錦源","description":"\u003ch4\u003e18歲，獲人生最大生日禮物 --- 絕症！\u003cbr\u003e「咩都可以做」，變成「咩都做唔到」；\u003cbr\u003e燒炭準備好，卻選擇輪椅上繼續求存；\u003cbr\u003e「我選咗唔死，就要接受！」\u003cbr\u003e重生了，他只盼以生命感動生命，歧視不再。\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cbr\u003e「我係曾錦源，今年24歲，患咗罕見病 --- 小腦萎縮症。」\u003cbr\u003e逾六呎高的個子，坐於輪椅上；被困的，不僅是軀殼，還有待振翅的人生；\u003cbr\u003e自言一向「牛記笠記」的錦源，如今一身莊重的西褲皮鞋，無非想打造一個「重生」的自己；\u003cbr\u003e抽筋、手震、行不到、平衡不了、發音不準，全身疼痛……這段「重生」之路，絕對艱辛；\u003cbr\u003e「其實我入院冇諗過會有絶症呢回事，以為拗柴唧！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-01.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-02.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e18歲生日禮物　接受唔到\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「係好大嘅『驚喜』！」18歲前數天，錦源因跌傷頭部入院檢查；豈料，「絕症」為他展開成年序幕。回想那刻，錦源坦承不懂反應：「連小腦萎縮症係咩都唔知，點會有反應？醫生話係絕症時，先識反應，先開始有情緒，不斷思考好多嘢，頭腦混亂，瞓唔到覺。」\u003c\/h4\u003e\n\u003ch4\u003e錦源竭力地吐出一字一句。發音不準是小腦萎縮症的病徵之一，因肌肉不協調，還致吞嚥困難、進食時易嗆咳，更產生重叠影像，無法閱讀和寫字。確診至今，六年了，跟時間一樣，退化，並沒停過。\u003c\/h4\u003e\n\u003ch4\u003e「父母生我嗰時都唔知，我基因再突變，所以又再嚴重啲。」錦源的病情，比媽媽嚴重多。\u003cbr\u003e他比一般發病年齡早了十多年，由年輕力壯瞬間變得四肢乏力、走一兩級樓梯都氣喘，最終靠輪椅代步。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-04.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-10_dd8138de-9230-4550-bf52-d1d2ec456d9a.png?v=1774426766\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e想考車牌 但考咗輪椅牌\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「做唔到以前想做嘅嘢，想18歲考個一二牌(車牌)，宜家就「考」咗呢個(輪椅牌) ！」\u003cbr\u003e回想起發病前，甚麼運動都愛做，尤其單車，「踩ROAD BIKE、超幼轆、窩釘鞋……好pro。」\u003cbr\u003e錦源浮起幕幕畫面，惟都只成追憶。「病發後都踩過，跌到成腳血，之後知道，所有平衡嘅運動，我都做唔到！」\u003c\/h4\u003e\n\u003ch4\u003e慢熱的錦源，因為我們的攝影器材而打開話題匣子，雀躍地跟團隊交流攝影心得，還自豪地展示得獎作品及「青少年藝術家」獎座。病發前，他本來任職攝影師；訪問當日，他拿出久違了的相機，想拍下附近風景，可惜也不容易。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-05.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-06.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e生不如死  折磨多五十年？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「睜大眼係要肌肉；我而家望嘢係一格一格慢慢咁移過去。」偶爾，錦源還會頭部抽筋，震得不能自主，「有時一隻杯都拎唔起！我宜家要食鎮定劑，但令血管受損，周身痛，要食止痛藥，有嗎啡成份，證明我真係好痛！」雙眼重影、行動不便…這病剝奪了錦源最大的人生樂趣，還使他失去工作能力。「冇癮呀，突然叫你咩都唔使做，喺屋企對住四幅牆，你想盡快死添！」被迫「遊手好閒」，他坦言生不如死；此症無薬可治，病情嚴重時，可能會癱瘓、臥床不起…「醫生話唔影響我壽命，但我幾想佢影響我壽命。我而家先24歲，如果我80歲命，折磨多我五十幾年呀，邊個接受到呀？！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-08.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-09.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e放棄自己  不如放棄自殺\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「成日瞓喺床，忍到好急先會離開。」錦源斷絕所有社交活動，窩在家中，足足維持了兩年。人生最低潮，他準備了炭，打算自殺。「一半想死，一半唔想死。因為接受唔到自己，咩都要人幫，成個廢人咁。唔想死係因為得18歲，就算坐輪椅都可以試下其他嘢。我咩都未試，我咁快要返去？！」那刻，一份「不甘」，讓他重生。\u003c\/h4\u003e\n\u003ch4\u003e當走近生命的盡頭，錦源自我轉化，也同時因社工的激勵，他重新站起，為生命奮戰。日常生活的障礙，他都逐一克服，如今衣食住行，他都能獨立自理，「五、六年時間，有好多嘢已經識得自己做。」\u003c\/h4\u003e\n\u003ch4\u003e少了怨懟，更多的是「活在當下」。錦源努力尋找方法自救，包括有助延緩病情的運動，嘗未嘗過的事情。他既參加划船等活動，又會到中學分享，做生命敎育。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-11.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-12.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不敢期望  惟盼感染他人\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e他還負責管理一個抗議殺校的臉書群組，他指，這是一間特殊學校，在香港已所剩無幾，而傷殘病童若要過海上學甚為不便，這事件引起他的關注，於是把有關連結、報道、相片分享到群組，希望能為病童發聲。\u003c\/h4\u003e\n\u003ch4\u003e對未來的期望，錦源雖然不太樂觀，但他仍抱有夢想。曾置身於黑暗角落的錦源，明白到被開解的重要性；因此他希望專修社會工作，但病情令這夢想難以實現，於是他轉讀較短期的輔導服務課程；期盼個人經歷，啟發同路人；更期待有根治藥物，避免再有下一位小腦萎縮症患者出現。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03-1_f79b9e0c-eb8d-4a15-a403-73ad792fb957.png?v=1774426837\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-13.jpg?v=1774425961\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不奢望平等  也不欲被標籤\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e突如其來的病症，令他不甘；旁人的目光，同樣令他不忿。「做咩望我呢？你有冇讀過書㗎？坐輪椅又點？你未見過輪椅咩？」曾持着拐杖坐關愛座但被狠瞪的錦源，坐輪椅初期，總常「放負」。\u003c\/h4\u003e\n\u003ch4\u003e一次，他在港鐵不小心撞及一位老婆婆，他即時道歉，但被路過的伯伯回他一句：「有病就唔好出街啦！」錦源刻骨銘心。一次，他在醫院門口跌爛了門牙，血流滿面，醫護人員看見卻沒出來幫忙。面對冷酷的旁觀者，以前他很在乎，現在已「被習慣」；不服輸的他拋下一句：「唔幫咪唔幫，唔幫咪靠自己囉！」\u003c\/h4\u003e\n\u003ch4\u003e錦源坦言，傷殘人士的要求其實很簡單。「已唔奢望有平等對待，但都唔希望被標籤為特殊、殘廢、怪異…」。只要在有需要時伸出援手：開門、「撳(車立)」、讓位，就已令他心滿意足。「冇需要就唔會坐啦，唔會喺額頭寫住『我係傷殘人士』㗎嘛！」這就是他想對世界說的話。\u003c\/h4\u003e\n\u003ch4\u003e「到現在，就算接受了這個病，也接受不到別人的眼光。」現在的錦源沒甚麽宏願，「我想每日都過得好開心，因為如果過得唔開心，就咩都係假！」錦源以此作總結。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-07.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-14.png?v=1774425962\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：小腦萎縮症是甚麼？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e小腦萎縮症，又稱脊髓小腦運動失調症 (spinocerebellar ataxia,SCA) 。患者的小腦、腦幹和脊髓會產生退化性萎縮，導致肌肉不受控制、不協調。病因大多數是自體顯性遺傳，發病年齡大部份從二十至四十歲開始。 這退化性疾病目前未有藥物可根治，只能進行復康訓練治療，讓患者盡量維持生活自理能力，持之以恆地練習，將有助延緩病情惡化的速度。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪、撰文: 梁劍紅、莊絲雅\u003cbr\u003e編審: 梁劍紅、AVY IP\u003cbr\u003e拍攝: Sea.Pho.Yea\u003cbr\u003e影片製作: Lifewire、陳澤朗、Sea.Pho.Yea\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"曾錦源","offer_id":43243485167734,"sku":null,"price":240.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3608-00.jpg?v=1774424407"},{"product_id":"肌肉萎縮男孩-駱俊霆","title":"Child with Muscle atrophy - Lok Chun-Ting","description":"\u003ch4\u003e\u003cspan\u003e“Mummy…” His mother hurries to come and fit the tube for him.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e“Mummy…” His mother rushes to come and turn him around.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e“Mummy…” His mother stretches out a hand to switch the TV channel for him while busily taking care of his younger siblings.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eHe is 11 years old, with normal intelligence, but an abnormal body.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003e“Do you know what disease you have?” The naive little boy answered with his slightly weak voice, “ I don’t know.”\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eAll he knows is that he experiences all these - lying on the bed all the time with different tubes connecting him to a ventilator and entering his stomach through a gastrostomy and so on – just to survive.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-01.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-02.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eChildren’s daily life is running and jumping happily in the park and playing with their classmates with no worries. Yet to Lok Chun-Ting who suffers from muscular dystrophy and neural diseases, these are all unreachable luxuries. When he was as young as a-few-year-old, he had already experienced two medical emergencies and could only move his hands, fingers and head. Ever since he was six, he has been connected to a ventilator via a tube inserted through his throat. For all those years, he has to lie on his bed as if imprisoned. Even when he bathes, he needs to bring along his ventilator.\u003c\/h4\u003e\n\u003ch4\u003eHe is optimistic. He loves watching cartoons and talking with others. Being visited by the Lifewire team, he was stiff and shy at first, but soon started waxing lyrical. With a tube inserted through his throat, his voice remained weak no matter how hard he tried, but this did not hinder his curiosity. He kept asking, “Are you staff from the television station?” There was always an innocent smile on his rosy cheeks.\u003cbr\u003e\u003cbr\u003eHe is also smart and proactive. When he saw our photographer taking photos, he curiously reached out his hands to try. However, he did not have the strength to even click the shutter, not to mention to hold the heavy camera. The photographer needed to place his hand over Chun-Ting’s little finger and click the shutter with Chun-Ting…\u003c\/h4\u003e\n\u003ch4\u003eWhile Chun-Ting’s intelligence grows, his body condition keeps deteriorating. Such relentless suffering is unimaginable to others, even the closet ones, but continuously torturing Chun-Ting’s family. “I want to buy a camera! I want to buy a camera! Mummy…” Chun-Ting kept yelling and begging after clicking the shutter, “Don’t go! I don’t allow you to go…” His request sounds unreasonable but is indeed a type of emotional transference or a way of emotional venting.\u003c\/h4\u003e\n\u003ch4\u003eBeing bedridden, Chun-Ting could only watch his younger siblings jump and play. Afterall, he is only a child. His craving yet desperate stare was heart-wrenching. He kept asking the team to role-play with him, wanting to play the role of a world-saving superman. Every time he succeeded, he laughed excitedly and requested the team to repeat the game. He enjoyed it so much that he never got bored of it.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-03.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-04.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eAbnormality observed at half years old - Nobody could help\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eExcept for his slightly smaller body size, which he had always had back in his mother’s stomach, Chun-Ting’s development in different aspects, such as intelligence, was completely normal during his early infancy. Even the doctor did not discover any problems in him. However, when Chun-Ting was six months old, his mother found that his calves were different from other babies’, “Other babies would move and jump, but his legs couldn’t jump. They were as straight as if dancing ballet and couldn’t fully bend.” She sought medical help in various fields: orthopedics, physiotherapy, acupuncture, … but none of them could identify the cause of Chun-Ting’s abnormality. This further added to her sense of helplessness.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eFinally, she met a doctor who dared not make hasty judgements but gave her some advice. “Don’t waste your money! It’s already very fortunate that his current condition is not bad. Don’t fancy that he’ll improve,” The doctor said, “It won’t help even if you bring him to other doctors. Just exercise more with him.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-07.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-16.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e“I really wanted to die the moment I knew this!”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eChun-Ting’s mother once suspected that the disease was hereditary, but there is no similar case in their family tree and the genetic check at the Queen Elizabeth Hospital suggested no similar genetic composition found in Hong Kong. It was not until after the Queen Mary Hospital sent Chun-Ting’s blood sample to an American laboratory that Chun-Ting was diagnosed with muscular dystrophy and neural diseases.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I really wanted to die the moment I knew this! It was so hard to accept!” the mother had no idea of muscular dystrophy, “I researched about it online and it turns out that this disease is horrible!” At the time, she was four months pregnant with Chun-Ting’s younger brother, “I told my husband that I felt like I’d rather abort the baby and I didn’t want him!” Facing the unbearable, devastating news, she not only worried about Chun-Ting, but also his younger sister and unborn brother, “If they felt unwell in any way, I would be so terrified that I couldn’t sleep all night.”\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e“Why me? Was it because I had done something wrong?” She used to feel gloomy towards Chun-Ting’s disease. She thought there was no way she could make any difference no matter how hard she tried. There would not be any miracles.\u003c\/h4\u003e\n\u003ch4\u003e“Everyone is heartbroken, but we don’t talk about it because nobody wants to face such a fact. We all want to escape from it.” Chun-Ting’s mother, father, grandmother and younger siblings seldom talk about his illness because they are afraid of hurting each other’s feelings. This rare disease is like a time tomb buried deep in the heart of Chun-Ting’s mother. Having no one to confide to, she alone bears the stress coming from the worry that one day, Chun-Ting’s siblings will also suffer from the disease like their elder brother…\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-08.jpg?v=1774487326\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-09.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eIntense discrimination - “He’s lame!”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eRecalling the past, Chun-Ting’s mother found it full of unpleasant memories. The most striking experience she could summon up was that once, Chun-Ting’s classmate yelled, “He’s lame!” when Chun-Ting went to school. These three simple words broke the mother’s heart but she could not blame the naive child. Every time she goes out with Chun-Ting, the passers-by look at them. Often, they also hear other children asking, “Why does that kid sit on a wheelchair?”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eMisunderstandings are also hurtful. Back in the time when Chun-Ting was small and the family had not bought a wheelchair for him, his mother brought him out with a baby stroller, “The drivers always asked us to fold the baby stroller. I explained to them that I couldn’t do so because my child couldn’t move around freely by himself, but they didn’t listen. They won’t set off unless I folded the stroller… It was really a struggle. He (Chun-Ting) had already had a big body size back then. I had to carry him with one arm and fold the stroller with another while holding many other things.” Experiencing various inconveniences with no understanding from others and being always scolded by drivers and looked at discriminatively, the mother felt strongly that she was wronged.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-10.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-11.jpg?v=1774487326\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eUp to twenty times a night - Impossible to sleep\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eThroughout the whole-day interview, we could see Chun-Ting’s mother closely taking care of him non-stop: sucking out sputum, turning him around, bringing him to the toilet, and stretching his limbs. She repeated these actions again and again, on and on… She used to be an office worker who loves working and enjoying Me Time. Yet given Chun-Ting’s situation, she had no choice but resign and take care of Chun-Ting and his younger siblings full-time, “I want to work. I like working very much. But it’s all gone. I can’t go to work!”\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eSince Chun-Ting constantly relies on a ventilator, he needs help day and night. Even in the midst of the night, his mother needs to pat his back to help remove the sputum in his chest, fill the ventilator’s humidifier with water, and so on, “When it’s sleeping time at night, he still keeps calling you. It’s actually impossible to sleep. Once you’ve just fallen asleep, he calls you again and you need to help him. As soon as you lay down on the bed, he calls again. He calls you more than ten, even twenty times a night. It’s really impossible to sleep!”\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eHaving to respond to Chun-Ting’s calls all the time and taking care of him twenty-four seven, his mother becomes both physically and mentally tense. Her incessant worries also add to her tension. “I always feel like trapped, as if I have nothing to do besides taking care of him. I feel like I own nothing. Watching him suffer, I also suffer, but I don’t know what I can do.” For families with rare disease patients, not only are the patients trapped, but also the caretakers.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-12.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-13.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eHigh medical expense for a family with seven members\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eApart from effort, money is also necessary to take care of a rare disease patient. Every day, Chun-Ting uses medical equipment and consumes many medical supplies such as milk powder, milk storage bags, sputum suction tubes and machine, humidifier, filter paper… The milk powder alone costs around two to three thousand dollars per month, “He drinks six boxes (of milk powder) each month and five bottles (of milk) each day. Sometimes when he’s hungry, he has six bottles.” With his father being the only breadwinner, the high medical expense further burdens the family financially.\u003c\/h4\u003e\n\u003ch4\u003eChun-Ting’s father works in the renovation industry. At the height of the pandemic, he almost had no work to do, “Around the Lunar New Year, he didn’t have work for nearly a month… Sometimes he doesn’t have enough work, but he needs to support so many people in the family (seven family members including the grandmother) and pay for the domestic helper. It’s stressful.”\u003c\/h4\u003e\n\u003ch4\u003eEvery time a renovation project is finished, the family has to start worrying about their livelihood because the father can do nothing but wait for the notice of the next project, “Sometimes when he stops working for a day or two, I become so nervous because he can only earn (income) when he has work that day.” Unstable income is another hidden concern of the family.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-17.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-18.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eWhen going to school becomes a luxury…\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eGoing to school is the daily life of every child, but for Chun-Ting, it all depends on timing. In order to take a rehabilitation bus to school, Chun-Ting and his mother must wake up at five in the morning and finish all the preparation, such as feeding milk, changing clothes, tidying up, and going to the toilet before leaving home, “It’s difficult for him and for everyone.” So, Chun-Ting can only go to school when they successfully reserve a seat on a rehabilitation bus.\u003c\/h4\u003e\n\u003ch4\u003eSince Chun-Ting constantly needs someone to help move his limbs and suck out his sputum, he needs to be closely taken care of outside home or in school. If his sputum is not removed in time, he may suffer from breathing difficulty, “But the school won’t assign someone to sit beside and help you. They have limited manpower and may not be able to handle his needs. Or maybe he has to wait for a long time before someone can come.” His mother has to look after his younger siblings at home, so the domestic helper must accompany Chun-Ting to school and take care of him closely throughout the day.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none; height: 845.324px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 419.212px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 419.212px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-05.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 426.112px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 426.112px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-06.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eWhole-family trip? Too wild a wish\u003c\/span\u003e\u003c\/h3\u003e\n\u003cdiv class=\"jresptbl half2col\"\u003e\n\u003cdiv class=\"col2-table-halfRow\"\u003e\n\u003ch4 class=\"table-col half-col\"\u003eHis mother asserted that she dared not fancy about the future, “I have not thought about my wishes for a long time. I had the thought of travelling together before, but it’s impossible. He cannot go out.” When Chun-Ting was two years old, the whole family went travelling for the first, and the last time. After that, since Chun-Ting’s condition deteriorated and needs to be taken care of closely, going out with him becomes a toilsome task. Even going to the park near home to play is a luxury, not to mention travelling.\u003c\/h4\u003e\n\u003ch4 class=\"table-col half-col\"\u003e\u003cspan\u003e“You really want to travel, but you can’t!” His mother said resignedly, “You really want to enjoy a pleasant diversion away from home, but you don’t have the chance to. I saw others going out with their families during the holidays, but we can’t. We can only stay at home.” \u0026nbsp;There are many things she wants to do with her family, but sadly, the reality does not allow.\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003c\/div\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-15.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-19.jpg?v=1774487328\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-21.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-20.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\" style=\"color: rgb(255, 42, 0);\"\u003eChange the mindset - Cherish every day\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eFrom countless times of disappointment to step-by-step acceptance of the reality, “I’ve been through many years since then, so I’m feeling better now.” As she has more experience with others’ disapproving stares and hurtful words caused by their lack of understanding and consideration, she gradually becomes “numb” and learns to not take them to heart, “I’ m already used to how others view us. Now, I simply neglect them.”\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eShe is also no longer obsessed with life, “Death isn’t a big thing. Just let him (Chun-Ting) live as long as he can. I haven’t thought of when he will leave.” She sees Chun-Ting watching cartoons and having top battles with his younger siblings, laughing happily but also quibbling with them like a normal child, “It’s fine as long as he’s happy. The future days will be fine as long as he’s happy.” She gives thanks every day for being able to see Chun-Ting.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“I glued the sputum suction machine. I think it’ll last for now.” “I think what he needs most is a wheelchair where we can place the sputum suction machine so that we can go out with him more conveniently.” The high medical expense is undoubtedly a heavy burden to the family. Although the sputum suction machine is worn, the mother can only fix the gap with adhesive tape.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-22.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-24.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-25.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-26.jpg?v=1774487327\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan class=\"txt-highlight\"\u003eApproximately $3,000 per month\u003c\/span\u003e\u003c\/h3\u003e\n\u003ctable class=\"gen\" border=\"0\" cellspacing=\"0\" cellpadding=\"5\"\u003e\n\u003ctbody\u003e\n\u003ctr class=\"odd\"\u003e\n\u003ctd class=\"\"\u003eStanding Adjustable Wheelchair\u003c\/td\u003e\n\u003ctd class=\"\"\u003eEstimated to be $50,000 – $60,000\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"even\"\u003e\n\u003ctd class=\"\"\u003eHumidifier\u003c\/td\u003e\n\u003ctd class=\"\"\u003eEstimated to be $6,300\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"odd\"\u003e\n\u003ctd class=\"\"\u003eSputum Suction Machine\u003c\/td\u003e\n\u003ctd class=\"\"\u003eEstimated to be $4,500\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"even\"\u003e\n\u003ctd class=\"\"\u003eManual Tilt Shower\/Commode Chair\u003c\/td\u003e\n\u003ctd class=\"\"\u003eEstimated to be $3,400\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"odd\"\u003e\n\u003ctd class=\"\"\u003eMilk Powder + Milk Storage Bags\u003c\/td\u003e\n\u003ctd class=\"\"\u003eApproximately $3,000 per month\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr class=\"even\"\u003e\n\u003ctd class=\"\"\u003eFiler Cotton\u003c\/td\u003e\n\u003ctd class=\"\"\u003eApproximately $300 per month\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cbr\u003e\u003cspan\u003eInterview and Wrting：鄭枝盈、梁劍紅\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eEdited by：梁劍紅、Avy Ip\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePhotography：Sea.Pho.Yea、Ken Mok\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eVideo Production：Lifewire、Ken Mok、Sea.Pho.Yea\u0026nbsp;\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Lok Chun-Ting","offer_id":43243485790326,"sku":null,"price":230.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3618-00.jpg?v=1774427692"},{"product_id":"末期罕癌女-盧瑋藍","title":"Girl with Rare, Terminal Cancer - Colour","description":"\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch4\u003e\u003cspan\u003eNovember 7, 2025\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eThe dog Oscar Has Graduated: Reunited with Colour in Heaven\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eIn 2022, Colour passed away after battling a rare bone cancer, leaving behind her beloved dog, Oscar, whom she regarded as her son. Before her passing, Colour implored Lifewire to find a good home for Oscar. Thankfully, a kind-hearted individual, Rosanna, stepped in to care for him, providing attentive support without concern for the emotional or daily expenses. We also thank everyone for their continued care for Oscar after Colour's departure.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eHowever, Oscar, who suffered from heart disease, had aged significantly. On Tuesday (November 4), it began vomiting, refused to eat, and displayed signs of distress. By yesterday, its heart rate slowed, and after being taken to the emergency room, it was discovered that it had issues with its lungs, stomach, gallbladder, pancreas, and kidneys. Unfortunately, there was nothing that could be done, and it passed away last night.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWe hope it has found relief from its suffering and is now reunited with Colour at the Rainbow Bridge.\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-01.jpg?v=1774491379\" alt=\"\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003cp\u003e2022\u003cbr\u003e\u003cstrong\u003eIn Memory of Colour: Her Bond with Oscar\u003c\/strong\u003e\u003c\/p\u003e\n\u003ch4\u003eDuring her life, Colour shared a deep bond with her dog, Oscar, whom she considered her son. She made a promise: \"In this life, I will take care of you; in the next life, you will take care of me.\"\u003cbr\u003e\u003cbr\u003eBefore her passing, Colour not only fulfilled her dream of a wedding photoshoot with Oscar but also asked us to find him a good home. Unfortunately, the aging Oscar was unable to find a long-term caregiver. However, kind-hearted individuals have stepped in temporarily to care for him, providing attentive care without concern for the emotional and daily expenses. Yet, as Oscar ages, he faces issues such as dental problems, cataracts, and heart conditions, leading to significant additional medical costs.\u003cbr\u003e\u003cbr\u003eFrom a humanitarian perspective, and to fulfill Colour's last wish, we will continue to accept donations to help Oscar. We will provide updates on the amount raised and medical expenses supported, along with the latest photos of Oscar in the \"Updates\" section, and we welcome kind-hearted individuals to check in.\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-03.jpg?v=1774491379\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-04.jpg?v=1774491379\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-05.jpg?v=1774491379\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cp\u003e\u003cmeta charset=\"UTF-8\"\u003e \u003cmeta name=\"viewport\" content=\"width=device-width, initial-scale=1.0\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-06.jpg?v=1774491379\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-07.jpg?v=1774491379\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-08.jpg?v=1774491380\" alt=\"\"\u003e\u003c\/div\u003e\n\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/cnBhC6krAJA\" title=\"【#透視罕見病】末期罕癌女：「我唔係好想死！」\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eVideo Music:\u0026nbsp;\u003c\/span\u003e\u003ca href=\"http:\/\/www.bensound.com\/\"\u003ewww.bensound.com\u003c\/a\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u0026nbsp;\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eWeighing just over 90 pounds and extremely frail, one leg is as thick as her waist. An eight to nine-inch tumor makes every step a struggle. After eight months of consultations, she went from being told, \"You have muscle inflammation!\" to finally being diagnosed with the rare \"osteosarcoma.\"\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e\"It's stage four; there won't be a fifth stage!\" Despite doctors stating she has only three months to live, she firmly refuses to give up: \"I'm not afraid of dying, but I must insist on living!\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003e“The pain recurs every day - at least continuously for a few hours - and is unbearable!” any woman in her 30s should be living the best and the most; however, Colour is too worn out by her struggle with a malignant tumor in her pelvis to even follow her favourite show nor the latest fashion trends, let alone working towards her career aspirations.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-09.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-15.jpg?v=1774491380\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eSeeking Treatment for 8 Months: Misdiagnosed as Muscle Inflammation\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e“I got diagnosed with ASPS - Alveolar Soft Part Sarcoma - in March this year. It is a kind of bone cancer.”\u003c\/h4\u003e\n\u003ch4\u003eIn July last year, Colour (LO Wai Nam) had an accident at home in which she had an injury around her pelvis. Since then, she has never lived a day without immense pain. “Sometimes it would hurt so bad in night time that I would not be able to sleep, twisting and turning - not unlike those victims in the Exorcist!” Colour went in and out of the hospital numerous times, seeking help from a dozen of doctors from all sorts of specialites, who had all jumped to the conclusion that it was muscular inflammation and dismissed her after prescribing regular pain killers and muscle gels for her. “How is it possible for a simple inflammation to hurt that much, and last for that long?” Colour requested for further investigations from these doctors, but kept getting rejected as they all didn’t consider it necessary.\u003c\/h4\u003e\n\u003ch4\u003eTowards the end of last year, while the intense pain sustained, she started having high fevers and losing weight drastically. “I was devastated and desperate, because there was no way to get better.” She was eventually referred to another TCM doctor, who had recommended her to get an X-ray for consultation with an orthopedist. That’s when she finally found out the source of her dreadful pain - there is a very rare malignant tumour in her pelvis, which had by then already spread to her lymphatic system and lungs. “The doctors told me it was in Stage 4, and that there would not be Stage 5 - because I probably would not live past that,” Colour recalls.\u003c\/h4\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-10.jpg?v=1774491379\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-11.jpg?v=1774491380\" alt=\"\"\u003e \u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-12.jpg?v=1774491379\" alt=\"\"\u003e\u003c\/div\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\"My thigh is swollen like my waist, and it feels like it could burst.\"\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eColour might have sounded indifferent, but her calm tone did not conceal her desperation from the continuous pain, which has been making it difficult to even just stand up. During our interview, Colour had been restless and couldn’t sit still, because she needed to keep shifting and finding new posture to alleviate her pain from staying in the same position for too long.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eUnable to absorb nutrients from her food efficiently, she gets tired very easily, her body frail from the weight loss as well. Her boney frame contrasts largely to her right thigh, which appears almost as thick as her waist.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“The worst part is the swollen thigh - it feels like it may explode any minute,” Colour shared her frustration over her right thigh, which has swollen tremendously to a circumference of 22.5 inches, whereas her left thigh only measures 16 inches.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eAgnogenic symptoms, unfortunately, is a woe commonly suffered by patients of rare diseases. “The doctors don’t seem to fully understand why this is the case, either. They suspect that the swelling could have something to do with some dead tissues in my bones,” with swollen tissues in her right thigh pressing on her nerves, together with blisters at the bottom of her feet, Colour is in so much pain whatever she does. Even though the bathroom and kitchen are only a few steps away, Colour will still have to lean on cranes and wheeled chairs heavily when moving around her small apartment. From time to time, her family will come over to help out with daily chores and prepare meals for her, as she is bedridden by her immense pain most of the days.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-13.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-14.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e“The pain only gets worse, never reaching the worst”\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eRegular painkillers can no longer ease my pain.\" Now, Colour has to take morphine daily, starting from half a pill to as many as four, but the pain still hasn’t let up. \"The pain is intense; it feels like it's coming from my heart. My whole leg hurts, so much that it wakes me up. I can't sleep at all.\" Colour often wakes up in pain several times a week, and without enough rest, she remains in a constant state of fatigue.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eIn conversations with Colour, it’s clear that she frequently repeats herself, as if she’s never said it before. \"I take so many medications that I keep forgetting! Wait, have I taken my meds yet?\" To help herself remember, she has put up a blackboard to track her medication schedule.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eASPS (Alveolar Soft Part Sarcoma) accounts for just 0.1% of all malignant tumors, making it a rare condition with no current treatment options. Targeted therapy, radiation, chemotherapy, and surgery have all proven ineffective. \"There's only one type of immunotherapy injection that can help control the progression of the disease, but it won't cure it.\" With no choices available, Colour's only option is to use immunotherapy to prevent deterioration.\u003cbr\u003e\u003cbr\u003eThe doctor pointed out, \"You haven't raised the funds yet, so why are you here? You're wasting everyone's time!\" Each immunotherapy injection costs $20,700. Originally scheduled to start in March, Colour had to wait until late May to receive her first dose due to fundraising delays. After that, she will need an injection every three weeks, starting with four, and may have to continue for up to two years, depending on her condition. However, even after three injections, the swelling in her leg remains severe, and she can only wear sandals on her right foot.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-16.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-17.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\"Because the cancer has not spread to the brain, funding is not available.\"\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003cspan class=\"grey-sm-txt-lifwire\"\u003e\u003cspan class=\"txt-highlight\"\u003e\"Because the cancer has not spread to the brain, I cannot apply for funding to help cover the cost of my injections.\" Due to her situation being deemed \"not severe enough,\" she is left to bear the immense financial burden alone. In addition to the immunotherapy injections, she takes over ten supplements daily, such as curcumin and vitamin B2, to boost her immune system, costing her thousands each month. The second-hand wheelchair and walker she uses were purchased earlier, and her savings are nearly depleted, but thankfully, friends have organized crowdfunding to help her.\u003cbr\u003e\u003cbr\u003eAfter her diagnosis, Colour was introduced to a treatment center in Central that offered free alternative therapies. However, the daily commute from Tin Shui Wai to Central posed a significant challenge in terms of both transportation costs and physical strain. Fortunately, she received help from kind-hearted individuals who offered rides. Nonetheless, as the swelling and pain in her right leg worsened, she could no longer walk to the necessary steps for treatment and had to give up.\u003cbr\u003e\u003cbr\u003e\"If others didn't have so many ways to think of and help themselves, I think they would just be waiting to die at home...\" While she constantly reminds herself to stay positive, there is a hint of resignation in her smile.\u003c\/span\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-18.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-19.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eGrateful to have encountered my former self\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eDuring the interview, Colour expressed occasional complaints, but more often, she conveyed gratitude. In her eyes, there are always good people doing good deeds. She has received help from many and does not take it for granted. \"I'm really grateful for the friends who volunteer to help me. If I get better, I promise to give back to the community even more.\" Before her illness, she had been a volunteer for eight or nine years and had contributed both time and money to organize various events. She mentioned multiple times her hope to join Lifewire to help other sick children once she recovers.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e\"Treasure everyone around you, cherish life, and appreciate everything you have; you never know when there might be no tomorrow...\" A serious illness has given her a deeper understanding of these truths.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/21-1_8b85414f-571e-4d94-a8fe-311aefab5c46.png?v=1774493624%20alt=\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-22.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003e\u0026nbsp;\u003c\/span\u003e\u003cstrong\u003e\u003cspan class=\"txt-highlight\"\u003eColour Lo：Thank you for your love\u003c\/span\u003e\u003c\/strong\u003e\u003cbr\u003e❤️\u003cspan\u003e\u0026nbsp;\"I am very grateful for the friends who help me.\"\u003c\/span\u003e\u003cbr\u003e❤️\u003cspan\u003e\"I am also very grateful for the free treatment I received in Central.\"\u003c\/span\u003e\u003cbr\u003e❤️\u003cspan\u003e\u0026nbsp;\"I really thank them (the volunteer friends), I am very happy, thank you so much.\"\u003c\/span\u003e\u003cbr\u003e❤️\u003cspan\u003e\"The medical social worker has been very helpful, assisting me in applying for the Comprehensive Social Security Assistance, which I was previously reluctant to apply for.\"\u003c\/span\u003e\u003cbr\u003e❤️\u003cspan\u003e\u0026nbsp;\"I'm fortunate that some friends donated money to me...\"\u003c\/span\u003e\u003cbr\u003e❤️\u003cspan\u003e\"The Housing Authority has also been very good, as they allowed me to move closer to my mom due to my special circumstances, making it easier for me to take care of her.\"\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-02.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-20.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\"I don't really want to die.\"\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003e\"Why was I chosen?\" Reflecting on the moment she first learned she had a serious illness, Colour completely broke down and cut off contact with all her friends. \"Many friends called and said they wanted to visit me, but I just couldn't accept it.\" With a strong will to survive, she quickly adjusted her mood upon realizing that negative emotions could worsen her condition, gradually accepting this reality. \"If the heavens want me to accept this, and they chose me, then I have to walk this path.\"\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eLooking back at Colour's old photos, in her prime, radiating a vibrant glow, it makes the present version of her, so frail, even more poignant. Yet, she speaks to herself with motivation, bravely facing the situation and actively seeking treatment. \"The doctor said I only had three months to live, but I've already passed those three months. I feel like I'm going to get better! I'm not afraid of death, but I must insist on living!\"\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e\"I don't really want to die! In fact, I was thinking about getting married and having kids. At my age, I don't think I should lose my life!\" Looking at the \"trophies\" in her shoe cabinet, Colour calmly says, \"I bought these shoes before and never wore them. Now that I don't have to work, I can't wear them. I'll wait until I'm better to start collecting nice shoes again!\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan\u003eAt this moment, she has only one goal: \"I hope the medication can spread through my body, so I won't need to use a wheelchair anymore. I want to be able to live independently, eat by myself, go to the bathroom, walk, and go out... I hope to return to being a normal person!\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eColour Lo： Message to Those with Rare Diseases\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003e\"Actually, having a rare disease is not such a terrifying thing. It’s a mission given to you by the heavens! It’s an opportunity for rebirth, and you should strive even harder. You must not give up on life; you have to keep moving forward and persevere until the end!\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-23.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-24.jpg?v=1774491379\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eUnderstanding Rare Diseases - Alveolar Soft Part Sarcoma (ASPS)\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eAlveolar Soft Part Sarcoma (ASPS) is a highly malignant soft tissue sarcoma that is quite rare, accounting for approximately 0.5% to 1% of all malignant soft tissue sarcomas. The condition is slightly more prevalent in females, making up about 60% of cases, and typically occurs in individuals aged 15 to 35 years. ASPS primarily develops in the deep muscle tissues of the limbs, with the thigh being the most common site.\u003c\/h4\u003e\n\u003ch4\u003eAlthough it grows slowly locally, ASPS has a significant ability to metastasize. Consequently, about 60% of patients have already experienced lung metastasis by the time of diagnosis.\u003c\/h4\u003e\n\u003ch4\u003e(Dr. Wu Bo-gui, MD - Director of the Musculoskeletal Tumor Treatment and Research Center, Taipei Veterans General Hospital)\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪、撰文：林穎怡、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Aiden Mak、Sea.Pho.Yea\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"Colour","offer_id":43243485855862,"sku":null,"price":110.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3615-00.jpg?v=1774489100"},{"product_id":"多發性關節攣縮症-happy-girl-方加穎","title":"多發性關節攣縮症 Happy Girl - 方加穎","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/hhMT3NHeWbs\" title=\"【#透視罕見病】多發性關節攣縮症 Happy Girl  一爸兩姊 不離不棄\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「由BB開始，吊到成身針，插晒喺頭，科學怪人咁……」\u003cbr\u003e「雙腿唔係向下，一隻係打橫飛起……」\u003cbr\u003e「個腦空白，但知佢好大鑊！」\u003cbr\u003e「每過一日就賺返嚟！」「上天畀我咁嘅安排，咪接手囉！」\u003cbr\u003e命運如此，這家人唯一的選擇是 ── 認命。\u003c\/h4\u003e\n\u003ch4\u003e「認命就舒服啲，你唔可以唔認命，佢仲有好多次手術未做，唔可以喺到等！」一次訪問，多次不諱言「心痛」；一個基因病變帶來的罕見病，讓這位爸爸被臣服於「命運」中。12歲的方加穎，未足兩歲已進行過三次手術；因她患上多發性關節攣縮症和馬蹄內翻，四肢關節攣縮無力，瘦骨如柴，雙手不能完全伸直，走路時一拐一拐。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none; height: 880.2px;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 440.1px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 440.1px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-02.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 440.1px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 440.1px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-03.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「唔係正常BB 我唔敢掂」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e此刻侃侃而談，十二年前卻一片空白，看着全身連頭吊滿針的加穎，猶如電影場景，加穎媽媽劈頭第一句：「我頂唔順！」爸爸也不知如何招架：「佢好驚，我第一次見，我話「我夠驚啦」！佢話，「你搞掂佢啦」，咁我就搞掂佢。」躺在醫院氧氣箱的加穎，異常地細小，「好細粒，唔係一個正常BB，我唔敢掂佢，唔知佢有咩事。」\u003c\/h4\u003e\n\u003ch4\u003e加穎出世時，雙腿不能正常擺放，一腿向下，另一腿屈曲着。醫生指其腿部脫臼，需戴腳架矯正，同時大腿要打石膏。這腳架緊隨加穎年多兩年，外出也只能推着嬰兒車，「抱都抱唔到，唔知點抱！」已育有兩女的方爸爸，自言懂得湊小朋友，「但對住佢無從入手，怕整親佢……」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\n\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-04.jpg?v=1774498483\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-05.jpg?v=1774498483\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-06.png?v=1774498485\"\u003e\n\u003c\/div\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e爸爸流淚眼　「我handle唔到」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「好醜怪，我坐喺醫院喊，我完全handle唔到…」回想那刻，他處理不來的，還有是如何面對家人。「我唔敢同父母講...唔想老人家擔心，諗唔到佢哋有咩反應。」返家後，卻頓感安慰，「兩個家姐見到，冇抗拒。我媽媽中風郁唔到，但BB瞓佢大脾上玩。外母又冇嘢；嗰吓知，原來係我多心，諗多咗！」說着說着，方爸爸眼眶又再濕潤起來。\u003c\/h4\u003e\n\u003ch4\u003e然而，最需要面對的，是否自己？「接受就一定接受，你知道係無得搞！」方爸爸最初堅拒傷殘津貼，「因為我覺得囡唔係傷殘，佢有病啫！喺我面前講佢係傷殘兒童，我係唔得㗎，雖然佢係，但又未去到嗰隻……」惟社工及醫生給他當頭棒喝：「唔係畀你㗎，畀佢㗎嘛！」他頓時「醒咗」：「要放低身段，即係我唔想做，但要做；你負責照顧佢嘛，點可以剝削佢有嘅權利？！」現時千多元的津貼，作交學費、車費及膳食費之用。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none; height: 882.2px;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 440.1px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 440.1px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-07.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 442.1px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 442.1px;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-14.jpg?v=1774498484\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「你望乜嘢，望夠未呀？」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e加穎長時間戴着腳架，難免惹來注視。「阿妹你做咩呀，你淥親呀？」方爸爸對這些並沒介懷，還教導加穎學會接受不同人的眼光，旁人只是不明白才發問。但也曾遇過有男士上樓梯時，不停回頭凝視加穎，令爸爸禁不住：「你望乜嘢，你望夠未呀？」\u003c\/h4\u003e\n\u003ch4\u003e「人哋有冇戴有色眼鏡？冇就呃你嘅！」爸爸只盼女兒能開心地建立正常的社交圈子，還幸加穎不大介意他人看法。爸爸不諱言需時刻陪伴她，「有時我都唔想跟住佢，但真係驚佢跌，佢試過行行吓左腳撠右腳躂咗喺度，跌落地佢會好危險㗎。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-08.jpg?v=1774498484\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-10.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e父女互窒  一家的默契\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e眼前這位瘦削爸爸，撐着拐仗，駝着背，拖着加穎的背影，滲着莫名的沉重感。方爸爸廿多歲時突確診強直性脊椎炎，兩月內急降40多磅，成為長期病患者，「我都有問醫生，阿女個病有冇關我事，佢話唔關事。好彩，咁都好啲，如果唔係，我瀨嘢喇！」說罷，對着兩女兒相視而笑。\u003c\/h4\u003e\n\u003ch4\u003e這種笑聲，其實一直貫穿着兩天的訪問，談及加穎病情，方爸爸總被觸動「眼淺」神經；但轉個頭又與加穎「攬頭攬頸」兼互窒。「可唔可以唔好笑得咁核突，女巫咁樣…」被「窒」的加穎，仰頭笑得更具「魔性」：「哈哈哈哈…」\u003c\/h4\u003e\n\u003ch4\u003e「越嚟越樣衰…」「你成個猿人咁…」「你條孖潤腸…」著兩父女互畫，卻互相描述得「不成人形」，但邊畫邊喪笑，合拍非常。爸爸躲在街角突衝出準備嚇加穎，但總被「洞悉先機」的加穎反嚇；畫面闡述一切 ---- 默契！\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-01.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-09.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「與眾不同」的硬淨女孩\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e時而捉着爸爸大喊：「打你屎忽！」時而又跟家姐頭貼頭嘻嘻哈哈；爸爸說：「兩個家姐好錫佢！」幫加穎梳着辮子的二家姐笑着說，「我哋夜晚一齊瞓；同佢一齊已經好開心！」大小庶務如洗澡、拉拉鏈、經常「服待」妹妹，還特別遷就她，「想幫佢做多啲，有時覺得好麻煩，但諗到佢病就冇所謂啦！」看到妹妹被爸媽罵，明知她有錯，「但都唔想佢俾人鬧，會喊埋一份！」\u003c\/h4\u003e\n\u003ch4\u003e鏡頭前的加穎，總以簡短式的「ok」、「唔知」等作回應，提及家人，就額外雀躍，「覺得自己曳，成日激爹哋同家姐，一時時會蝦家姐；家姐有份蝦我㗎，成日「唧」我，我又「唧」返佢……」表情多變愛笑；如方爸爸所言：「加穎好硬淨，當然佢會喊，但起碼佢好開心，係一個Happy Girl！」\u003c\/h4\u003e\n\u003ch4\u003e惟這樂天女孩也有「喊到飛起」之時，「之前做兩次腳手術，痛就撳掣打止痛劑，佢痛到死寧願忍都唔肯撳，因為佢覺得啲嘢流落身到好核突，佢好驚。」舊事重提，加穎一貫只笑不置評；惟提及「與眾不同」的身體，她有感而發，「以前會唔開心，可能係有啲野做唔到，好似見到同學跑得好快，但自己跑唔到，想同佢哋玩都追唔到佢哋……」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-11.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-12.jpg?v=1774498483\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e背脊值10萬 全家最貴\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「當你喺病床、手術床長大，每過一日就一日啦，賺返嚟㗎！」方爸爸坦言，加穎小時候常做手術，至現在懂得拿筆和筷子，不再要求什麼。「霍金咁可以做科學家，我唔望佢做呢啲，佢健康快樂，成長到，唔好再做咁多次手術，我就開心。」\u003c\/h4\u003e\n\u003ch4\u003e加穎三歲時被發現腰脊彎曲，原來是脊柱側彎，需放「成長棒」到體內，並定期返醫院調節及更換；而手術費為十萬元，對一般家庭無疑是個重擔。「阿妹個背脊值10萬，係全家最貴，啲賊嚟偷嘢無嘢偷，偷咗佢，但都無得拆咗佢重用。」愛搞Gag的方爸爸苦笑道：「最壞咪賣咗層樓囉，但賣咗層樓，咁點呀？可以做幾多次？最大穫係我唔知佢有幾多個問題呀嘛！」對於未來，爸爸沒太大期望，但感恩加穎手術獲善長捐助，讓他們一家人能暫時渡過難關。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e小小小心願：全家周圍玩\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「長洲，踩單車！」著加穎分享印象最深刻的回憶，她最記得爺爺跟他們一家人四出遊玩。哪將來呢？有甚麼夢想？「畫畫！唔知畫咩，本身喺YouTube學畫畫！」此刻最想做甚麼呢？「想去玩！成家去日本或者台灣。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-13.jpg?v=1774498483\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病 - 甚麼是先天性多發性關節攣縮症？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e根據網上資料顯示，先天性多發性關節攣縮症（AMC）屬罕見疾病，全港每年僅有一至兩宗，大部分個案均由基因問題引起，部分成因未明，主要影響筋骨肌肉發展，亦有個案可致影響心臟、食道、腸等器官發展。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪及撰文：梁保瑜、楊嘉頴、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e攝影：Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Sea.Pho.Yea、Sam Kwok\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"方加穎","offer_id":43243485888630,"sku":null,"price":100.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3612-00_0845f98c-791e-4403-835d-9c73117defe2.png?v=1774497403"},{"product_id":"曾經的不孝兒-許毓青","title":"曾經的不孝兒 - 許毓青","description":"\u003ch4\u003e如果，人生是一場戲，他的戲份，絕對是終極挑戰；\u003cbr\u003e年少輕狂、人生高峰、四肢癱瘓、求死不能，爸爸患癌逝世……\u003cbr\u003e換作是你，會否立即辭演？\u003cbr\u003e惟有他，咬緊牙關，落力撐下去……\u003cbr\u003e此刻，輪椅上的他只寄望陪着媽媽，返鄉到爸爸墳前，說聲對不起！\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-01.jpg?v=1774507235\"\u003e\u003c\/p\u003e\n\u003ch4\u003e「有事業又見到心儀嘅女仔，覺得自己係好幸福嘅男人！」片段回到2002年的大年初五，許毓青回鄉與爸媽過年並「相睇」；女孩為專業人士，兩人一見如故，他更決定摒棄過往愛夜蒲揮霍無度的自己，準備成家立室。\u003c\/h4\u003e\n\u003ch4\u003e豈料，兩天後，高速公路的一場車禍，他的美滿人生隨車一起雙雙跌落谷底。從此頸椎神經嚴重受損，胸口以下完全喪失知覺及活動能力，「完全郁唔到，變咗全癱人士！幸福咗兩日之後所有嘢都冇晒！」\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-02.jpg?v=1774507235\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-03.jpg?v=1774507235\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e人生歸零 求死卻不行\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「想死！醫生點解要救我？！」癱臥床上不能自理，他形容自己像木乃伊。「轉身都唔得，飲水、搲痕…所有嘢都要爸媽幫手做！」「好灰！好記得醫生講話你以後都要瞓喺張床…但好可悲連死都死唔到，跟住選擇咗逃避收埋自己，完全唔理任何人，包括爸媽。」\u003c\/h4\u003e\n\u003ch4\u003e意外後，爸媽不分晝夜全天候輪流照顧，做8小時運動、半夜幫他轉身拍背、兩老更將當時180磅的毓青由房間抬到廁所，每天無間斷服待他沖涼及大小便，無微不至，即使身體不適也沒吐半點苦水，無怨無悔的繼續照顧及給予鼓勵。他們更傾盡積蓄、四出借錢為兒子醫治，一時間欠債廿多萬。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-04.jpg?v=1774507236\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-05.jpg?v=1774507235\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「你去死啦！」粗口報親恩\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e他不但沒半點感激，更常遷怒於爸媽，「『你去死啦！』好多粗口，極不孝嘅說話……」不堪回首，毓青深刻記得父母當時的表情，「係好心噏，但唔可以鬧我，又唔可以做到好唔開心，要強顏歡笑繼續做。」\u003c\/h4\u003e\n\u003ch4\u003e兩年過去，爸爸終忍不住開口：「『你可唔可以唔好咁樣「pair」落去』……我完全唔騷佢，佢好無奈行返出去，第二日開始飲酒……」爸爸努力勸勉，但眼見兒子依然自暴自棄，不瞅不睬，開始酗酒度日，麻醉自己。「飲飽佢飲死佢囉，關我咩事？！」爸爸每天烈酒當水飲至身體出問題，媽媽懇求毓青勸戒，他還是冷漠回應。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e父燃燒生命 讓兒子重生\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e一天，爸爸突倒地不起，送院後證實因長期過度酗酒，酒精肝中毒，令神經麻痺，致雙腳不便，終以拐杖走路。自此，照顧毓青的責任便由媽媽獨力承擔；她因常抬着毓青出入，致手筋受損，雙手險永久殘廢。\u003c\/h4\u003e\n\u003ch4\u003e「我見住爸爸好想爬起身，當時我好想去嗌「爸爸你點呀？」但我冇嗌到，嗰時我流晒眼淚，掩住個口驚佢見到我喊，跟住佢爬去一個我見唔到嘅地方。」\u003c\/h4\u003e\n\u003ch4\u003e自我封閉兩年，爸爸的倒下，反令毓青有所頓悟，「我以前咁對你哋，點解你哋仲可以咁對我？我收埋逃避兩年得到啲乜？搞到爸媽身體越來越差，我開心咩？呢條路唔得，會唔會諗第二條路行呢？」自我反省後，他決心努力改變心態，嘗試聽爸爸話，做運動改變自己的活動能力。\u003c\/h4\u003e\n\u003ch4\u003e「雖然好痛，但諗到爸媽，兩老咁多年為我承受咁多痛苦，呢啲痛算係乜？！我仲未死，不斷練習咗兩個月，開始叫做喐到，就試下玩電腦，洗面、刷牙，盡量減輕爸媽的負擔！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none; height: 856.224px;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 424.112px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 424.112px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-06.jpg?v=1774507235\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 432.112px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border: none; height: 432.112px;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-07.jpg?v=1774507235\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e第一次出街 全不敢抬頭\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e其後，路向四肢傷殘人士協會的義工邀請他一起踏出社區；意外後首次踏出家門，「我淨係低頭完全唔敢望任何人。」惟毓青抵酒樓首遇一班輪椅同路人，啟發油然而生。「佢哋有啲比我嚴重得多，有人得個頭喐到，其實自己都唔係咁差，點解人哋做到我做唔到？有少少衝動想行返出嚟社區，為社會做多啲嘢。我最想返內地幫助山區小朋友，呢個係我最大嘅夢想！」\u003c\/h4\u003e\n\u003ch4\u003e「我哋傾多咗偈，仲會互窒。」當毓青不再自我封閉，與爸媽的關係更日漸深厚；也許過份勞累，爸媽去年先後確診食道癌。笑着的毓青難掩內疚：「我以前冇孝順過、冇好好對佢哋，希望喺有限的情況，做到仔女應做嘅嘢。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e子欲養而…… 有心唔怕遲\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「做就即刻做，點解要等？」毓青爸爸去年父親節當天離開了，他更體會「珍惜當下」的重要。「以前朋友都問我唔使返屋企陪爸媽咩？我話有咩所謂，你估我咁快死咩？當受傷後，咪趕唔切囉，坐咗輪椅後，你又做到啲咩呢？」\u003c\/h4\u003e\n\u003ch4\u003e錯過很多，不能失去更多。毓青盼望與媽媽回鄉，拜祭爸爸並承諾孝順媽媽，「呢個會係人生中我同媽媽嘅美好回憶。」他嗟嘆：「爸爸在生時一齊做咪幾好，?家好似遲咗一步，但識得返轉頭咪得囉……」回鄉拜祭，像是微不足道；而然，坐着四個轆的他，攀山涉水十多小時回鄉談何容易？！其實，只需租用一輛能同時載健全人士及提供升降台予輪椅人士的復康車、及點點的旅費即能解決，你願意助毓青達成這卑微的心願嗎？\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-08.jpg?v=1774507235\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-09.jpg?v=1774507236\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e心願清單\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\n\u003cbr\u003e1.「同媽媽回鄉拜爸爸，同佢傾下偈，會應承佢好好對媽媽，孝順佢，希望佢健康咁同我一齊生活。」\u003c\/h4\u003e\n\u003ch4\u003e2.「好想帶阿媽周圍去行下，見多年無見的親戚長輩，我一生中未試過帶爸媽去旅行，最內疚呢樣嘢。」\u003c\/h4\u003e\n\u003ch4\u003e3.「返內地幫助山區小朋友，呢個係我最大夢想！因為佢哋好慘，有啲人無錢讀書，或屋企連最簡單基本日常生活，日用品、衫、筆都無，我想去幫助佢哋。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪、撰文: 李楚瑩、梁劍紅\u003cbr\u003e編審: 梁劍紅、AVY IP\u003cbr\u003e拍攝: Sea.Pho.Yea、Yan \u003cbr\u003e影片製作: Lifewire、Sea.Pho.Ye\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"許毓青","offer_id":43243485921398,"sku":null,"price":91.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3610-00.jpg?v=1774506556"},{"product_id":"歌舞伎症女孩-謝梓熙","title":"歌舞伎症女孩 - 謝梓熙","description":"\u003cp\u003e\u003ciframe title=\"歌舞伎症女孩　衝破標籤枷鎖  「我都係好開心囉！」\" src=\"https:\/\/www.youtube.com\/embed\/Svfi-DpoPKk\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「我個名係Sophie，我今年十三歲，我有Kabuki Syndrome；但我都係好開心囉。」\u003c\/h4\u003e\n\u003ch4\u003e眼前的梓熙，右眼稍下垂及眼瞼外翻，走路時一拐一拐；但說話率真可愛，單純樂天得一件雞蛋仔足以教她樂上半天，難以聯想到，她患上了罕見的「歌舞伎症候群」。\u003c\/h4\u003e\n\u003ch4\u003e難以想像的，還有當年的梓熙媽媽，「呢個Shock (震驚) 係大到好似個天跌落嚟，係好痛苦！」這個「極之極之大嘅打擊」，始於梓熙兩歲確診之時。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-01.jpg?v=1774509827\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-02.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e心漏 貓眼  盤骨移位\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e梓熙出世已有心漏，並出現Coloboma (俗稱「貓眼」)，即眼睛虹膜缺損，會怕光及視力較弱；約一歲更發現她的盤骨已移位，需即進行手術。「包紮咗成八個月，復原好慢，一行就會影響到，所以唔俾郁，要成個身連腳仔都包埋，全部都係一個石膏，淨係凸腳裸出嚟，好似花樽人咁……」\u003c\/h4\u003e\n\u003ch4\u003e照顧這小小「花樽人」，還得擔憂其脆弱小心臟，「啲瘀血流得唔順暢，會積聚喺心肺，會變漲，所以嗰時要食薄血丸。」媽媽一直期待着梓熙的心漏能自我修復，惟奇蹟並沒出現，那個「窿窿」還不小；最終於4歲進行了手術。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-03.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-04.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e與世隔絕  自我鞭撻\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e此刻侃侃而談，但那年那刻，一切歷歷在目：「唔敢出去見人。」避見朋友四年的她，心中有無盡疑問，卻找不到答案。「個心好驚，好痛苦，好想收埋自己……唔想人哋問起囡囡嘅事，唔識點講。」\u003c\/h4\u003e\n\u003ch4\u003e懷胎十月把女兒帶來世上，卻面對如此困局，她不停自責，「點解會係我呢？我做錯咗乜嘢？係我唔小心？係咪食錯嘢？係咪冇聽老人言飲凍嘢飲奶茶……」不斷的自我鞭撻，她直言源於對罕見病的認知有限。\u003c\/h4\u003e\n\u003ch4\u003e回想那段與世隔絕的日子，其實她最渴望有人給予方向，好讓她知道如何面對。「好多人都唔完美，只係我哋識得修飾……其實邊個係完美呢？慢慢自己就放低咗，或者可能接受咗。」終在女兒八歲時，她走出這陰霾。\u003c\/h4\u003e\n\u003ch4\u003e有所頓悟，也許源於更透徹的囡囡：「佢叻過我，我相信係佢細個已經知……但佢唔係我咁『柄』埋自己，佢唔覺有咩問題；佢識得話俾人聽：『係呀！我跑唔到呀！我唔係跑得好快㗎咋』佢會用平常心地去對呢件事。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-06.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-07.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-08.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-09.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「天生就係咁，佢冇錯！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e作為過來人，她說政府若可提供專業引導及資訊，絕對能助病患家庭減少負面情緒，也該能減少社會對他們的歧視誤解。偶爾，梓熙都會承受外界的奇異目光，長大懂事後，她開始迴避。「啲人咁樣睇個囡，我就想打人一身，會好忟憎，好嬲！」\u003c\/h4\u003e\n\u003ch4\u003e「我成日同囡囡講，天生就係咁，佢冇錯。」帶着堅定的語氣，這位媽媽期盼大家可理解和接納世上有很多不同類型的人，每個人都會有不同的狀況。「傷健共融」不該只是口號，但社會能真正做到，仍是一段漫長的路。\u003c\/h4\u003e\n\u003ch4\u003e友善的梓熙，首次跟Lifewire團隊見面，已熱情地拖着我們，介紹睡房中最喜愛的公仔、獎狀、玩具……滔滔不絕的訴說軼事，活像一個無憂無慮的小公主。然而，快樂城堡內，卻暗藏了一根剌。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-10.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-11.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e欺凌歧視  標籤枷鎖\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「佢哋會嗌我核突嗰啲嘢囉。」曾就讀主流學校的梓熙，常被同學冷嘲熱諷，久久未能融入，「同學問我點解我一個 (隻) 眼係大過另外一個 (隻)？」「點解我行得咁得意？」「有啲大人會對我好大聲叫，咁就會……我覺得佢哋唔鍾意我，咁就……」原本整天在笑的她，回想「暗黑時期」，禁不住抽泣起來，我們也不忍再問下去。\u003c\/h4\u003e\n\u003ch4\u003e容不下梓熙的，不僅是主流學校，還有是被標籤的枷鎖。「唔敢或者唔想畀囡囡去特殊學校，害怕她被標籤為殘疾人士。」媽媽曾為此很掙扎；不過，為着女兒，決定衝破這心結。\u003c\/h4\u003e\n\u003ch4\u003e還幸，三年級轉讀特殊學校後，梓熙找到了屬於自己的天地，因為同學們有着和她相似的經歷，再沒欺凌、再沒歧視，「好開心囉，因為好多小朋友好似我咁樣，有少少Disability（殘疾）。」新環境給予梓熙更多空間去慢慢學習，尋回自信，還認識到好朋友：「我宜家有五、六個好朋友，我喺學校好開心，朋友對我都好好。」\u003c\/h4\u003e\n\u003ch4\u003e破涕為笑的梓熙，隨即致電好朋友，開心的商量返學開派對的準備。媽媽看在眼裏，一臉寛心。「梓熙的人生真正需要的是自尊，一種自我存在的價值；希望她可以找到自己的路，建立自己的社交圈子，能夠好好享受生活。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-12.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-13.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e一個轉念  一次重生\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e突如其來的罕見病，令人措手不及，更教人迷失。「咪想落咗佢囉！」當年最徬徨之際，梓熙媽媽竟發現自己懷上第二胎，「擇公字、睇相、問八字，乜鬼都做晒。真係一念之差，一秒間你可以破壞佢；但返唔到轉頭，人嘅可能性係好多㗎嘛！點解咁快又將我仔嘅可能性cut咗佢呢？！」\u003c\/h4\u003e\n\u003ch4\u003e一念天堂、一念地獄。猶幸，一個轉念，他獲重生；如今，他成為了家中小暖男，「你洗咗手未？！」「你肚唔肚餓？！」話音未落，這位噓寒問暖的弟弟，已下廚為家姐梓熙做下午茶。\u003c\/h4\u003e\n\u003ch4\u003e「我喺屋企係好開心，全家人都好愛錫我！」弟弟待家姐如掌上明珠。「有人蝦我，細佬會鬧佢哋；我玩佢啲遊戲，佢會即刻嗌佢啲朋友唔好殺我。」這倆姊弟邊品嚐「愛心多士」、邊滿足地笑着互相凝視；彷彿，上天將最好的家人，都安排到她身邊。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-14.jpg?v=1774509828\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-15.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e衝開桎梏　海闊天空\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e極罕見病雖降落於這小天使身上，幸4歲進行了修補心漏手術後，身體一直有進步，如今她能歌善舞、彈琴作畫、烹飪下廚、攀石游泳……，她都享受其中。「佢出世到依家，轉變已經好大，可能性多咗好多好多！我覺得我個囡大把將來，可以好好，好positive(正面)，分分鐘可能好過我添！」\u003c\/h4\u003e\n\u003ch4\u003e憑藉毅力，梓熙用行動告訴大家，病魔抺殺不掉其可能性、歧視也磨不滅其決心。她寄語病患朋友：「如果你覺得有人蝦你，就要同家人講，佢哋會諗方法幫你解決！」梓熙的正能量，沒因病而喪失對生命的熱情，反而活出自己的精彩人生，創造屬於自己的故事，感染着所有人。\u003c\/h4\u003e\n\u003ch4\u003e梓熙，不幸患上罕見病；然而，她卻比大部份罕見病患者幸運，\u003cbr\u003e社會上仍有許多因罕見病而生命受威脅的人，\u003cbr\u003e需要我們給予關懷和支持，\u003cbr\u003e讓生命得以延續。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-16.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-17.jpg?v=1774509829\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：甚麼是「歌舞伎症候群」？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e歌舞伎症候群為一種先天性多重異常合併智能發展遲緩的疾病，患者主要症狀有特殊的臉部特徵、生長遲緩、智能障礙、心漏、骨骼問題和 Coloboma (眼器官先天裂開與腦神經缺損)。Coloboma是指在胎兒階段，眼睛還未發育完成時，便完成了整個程序；眼球通常呈欖核形般，類似貓眼，並容易患上弱視或近視。 由於患者大多似日本傳統歌舞劇之臉譜，皮膚白皙、眉毛長而寬、睫毛長且明顯、下外側眼瞼外翻、較長的眼裂及低扁鼻尖，故以此命名。 據估計，日本每32,000位新生兒中，便有一位患者。有患者是基因致病，部份則原因未明。 梓熙媽媽指：「呢啲徵狀冇得用Medical（醫療）去治療，只能夠修復一下。」此病症狀因人而異，還有其他問題可能涉及內臟，因此患病的程度存在很大差異。 \u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e部份資料來源：台灣財團法人罕見疾病基金會 \u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪及撰文：鄭宇丹、梁劍紅\u003cbr\u003e編審：梁劍紅、Avy Ip\u003cbr\u003e硬照攝影：Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、陳澤朗\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"謝梓熙","offer_id":43243485954166,"sku":null,"price":90.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3607-00.jpg?v=1774509785"},{"product_id":"視障詩人-盧勁馳","title":"視障詩人 - 盧勁馳","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/1bcVPR-wxhs\" title=\"【#透視罕見病】怕光怕聲 怪病纏身   視障詩人求醫20年變「人球」\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e他有一雙眼，但點點光線令他反胃……\u003cbr\u003e他有一雙耳，但陣陣涼風叫他疼痛……\u003cbr\u003e他有一雙手，但每一個觸碰都使他「十指痛歸心」……\u003cbr\u003e一個沒名字的怪病，纏繞他20年，不同醫院、不同醫生……\u003cbr\u003e均說不出病因，他慘成「人球」被踢來踢去……\u003cbr\u003e一個無法確診的怪病，儼如利刀，割斷一切援助，令復康之路蒙上一層又一層的陰霾……\u003cbr\u003e「我係被邊緣化到冇辦法得到支援」，他是視障詩人──盧勁馳。\u003c\/h4\u003e\n\u003ch4\u003e「廿年來俾政府人球咁喺醫療制度中拋來拋去……」過去20年，勁馳穿梭於各醫院的眼科、耳鼻喉科、內科、神經科等……但，病因還是成迷。\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-01.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-02.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e長期篤屏幕 手指如刀割\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e勁馳16歲時確診患上黃斑點視網膜退化，原因不明。視力退化，更令他慢慢怕光，「我視力好差，但唔係全黑，不過望到少少光會令我頭痛、反胃、想嘔，然後啲肌肉好痛，神經反應好異常。」\u003c\/h4\u003e\n\u003ch4\u003e決心學打掌、使用盲人工具、用電腦「聽書」取代「睇書」，可惜又遇上另一障礙，「19歲突然聽嘢好痛，唔止聽聲好似好大聲，行出街大風吹到內耳痛，好似發炎咁痛，但睇醫生係冇發炎癥狀。啲電腦軟件讀文字出來聽，我聽耐少少會好辛苦，好似抽筋咁。」\u003c\/h4\u003e\n\u003ch4\u003e尤其頭及頸，特別易抽筋，「有時要擰吓個頭，等啲筋唔使壓得咁辛苦。」勁馳使用智能手機時，以手寫筆代替雙手，原來怪病一直「蔓延」，「學凸字去摸，後來發覺連手指都好敏感，好似有把刀喺手指到?。用手機用得耐，手指頭會痛，然後傳到去心口。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-03.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-04.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e醫生稱無病 勸開心過活\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e然而，勁馳從沒放棄自己，不論哪個醫生、做多少檢查，仍查不出他感官過敏、肌肉繃緊及抽筋的病因，「所有醫生根本唔覺得我有病，然後全部勸你唔好當自己有病，開開心心生活啦。」\u003c\/h4\u003e\n\u003ch4\u003e專科醫生無從入手，惟有「close file」，輾轉間只剩下精神科醫生跟進，但病情無改善，反因服藥而得副作用，「睇返啲藥，係焦慮症嘅藥，我一直覺得醫院對我嘅診斷有問題，係誤診。」\u003c\/h4\u003e\n\u003ch4\u003e西醫懷疑勁馳的怪病來自他受到某些長期傷害而出現幻想或主觀感受，覺得身體有痛症；於是，勁馳向心理醫生、社工求助，「我好認真面對自己個病，同社工、心理醫生傾，但佢哋覺得我個病可能同精神科無關。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-05.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-06.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e尋另類療法 從脊骨入手\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「冇醫生診斷到我係乜嘢病，好徬徨好無助。」身處難關，卻令勁馳決心「自救」。他嘗試從跌打及脊醫等療法入手，「有一個派系嘅脊醫話我條脊骨一定係歪，但唔似脊柱側彎般90度彎曲，而係好似扭螺絲咁沿着筋膜地扭，所以會全身繃緊。」\u003c\/h4\u003e\n\u003ch4\u003e他又指，脊骨移位的問題需要持續做骨架調整，在骨塊中找方法令它們慢慢復正。之前獲某慈善基金捐款，到澳洲治療半年，花費約10多萬，效果不俗，「喺外國要醫到好好狀態要幾年，但我冇能力留喺嗰度幾年。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e醫療費昂貴 夠買幾層樓\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「我醫咗20年，成個家族經濟脈絡全俾我拖累晒……」勁馳坦言，過去花在求醫、檢查及治療等的費用龐大，「我估夠買幾層樓，屋企嘅資產都轉賣晒。父母退休前支持我咁多年，宜家都冇喇。」當年，甚至要向親戚借錢，才足夠應付。\u003c\/h4\u003e\n\u003ch4\u003e勁馳不想長期依靠親友，故忍痛完成學業，「我讀書過程係不斷克服每一種退化，睇唔到，會用輔助儀器；儀器用唔到，就靠聽；聽都辛苦，就學凸字，最後係捱，每日摸凸字摸得好痛好辛苦，一步一步捱過。」\u003c\/h4\u003e\n\u003ch4\u003e「捱」過五次會考、再讀副學士，直到26歲才考入港大，並修畢比較文學碩士課程，投身社會已經32歲，「嗰時喺社企做嘢，環境太嘈，嘈到瞓唔到覺，精神神經衰弱……」兩年後，他轉做文職，當時收入約1萬元，「就算唔係好有發揮，我都覺得OK，用自己雙手賺到生活費，我覺得好自豪。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-07.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-08.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e無限期停工 靠綜援維生\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e無奈神經經常受到刺激，令他感到痛楚，情緒更大受困擾，「差起上嚟嗰種狀態會係全身肌肉筋腱發炎，感覺好似受傷，出完街成身肌肉痛，好唔開心，挫敗感好強。」精神狀態支持不到長期的文書工作，三年後惟有「停工」。\u003c\/h4\u003e\n\u003ch4\u003e刻下的勁馳「行得走得」，每日的「例行公事」是2至3小時的拉筋及伸展運動，旁人眼中看似正常，但實情是有苦自己知，每個月要進行脊醫治療減輕痛楚，又要買營養補足品，「有人視為補品，對我嚟講係減緩痛苦嘅必須品。」\u003c\/h4\u003e\n\u003ch4\u003e這些另類療法的基本開支，每月就要7,000元，「宜家完全做唔到嘢，拎綜援每個月4,000蚊左右，仲差3,000蚊。如果我係罕見病、遺傳病，我可以搞個病人組織搵支援、同路人，但醫生未能判診，就算（申領）傷殘津貼都要醫生簽，我係被邊緣化到冇辦法得到支援。」\u003c\/h4\u003e\n\u003ch4\u003e勁馳一臉徬徨說：「我拎綜援都好大壓力，一個月（使費）一萬幾千，全部冇人支持你，人生可以點？」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-09.jpg?v=1774512156\"\u003e 訪問尾聲，勁馳在電腦展示一段他早前覆診所打的文字：\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e我實實在在的告訴你們\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e其實把自己看為甚麼病也沒有，過着正常人的生活，\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e才是真正漠視現實；\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e因為過去20年來，\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e我就是以這樣的方式生活着。\u003c\/span\u003e\n\u003c\/h4\u003e\n\u003ch4\u003e「呢啲係醫生經常要求我做嘅嘢，係不切實際、漠視現實。因為咁多年來，我每日都克服每分每秒嘅痛苦，不斷諗點去治療或者舒緩自己嘅狀態。你（醫生）叫我當自己冇嘢，係否定我20年來經驗過嘅嘢，係好無情嘅說話。」\u003c\/h4\u003e\n\u003ch4\u003e\n\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e眼：黃斑點視網膜退化、接觸光線即頭痛、反胃、作嘔；\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e耳：長時間以聽覺接收資訊會感到疼痛；風吹入耳會感痛楚，像內耳發炎一般；\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e手指：觸覺極度敏感，長時間用手指觸碰智能電話，手指頭會感到「如刀割之痛」；\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e肩頸：脊柱側彎；\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e肌肉：全身肌肉無力，不能做劇烈運動。\u003c\/span\u003e\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-10.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-11.jpg?v=1774512156\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e文學世界缺殘疾人士聲音\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e一扇門看似關上，誰知另一扇窗已悄悄地打開……2013至16年間，勁馳協助慈善機構出版殘疾人士經歷的結集，親身採訪及寫稿，「因為自己好有興趣，隨住身體經歷越來越多，好想了解不同殘疾人士嘅親身經歷。因為我覺得文學創作世界入面，殘疾人士嘅聲音仍然缺乏。」雖然稿費微薄，但他認為能為同路人發聲，也是一種貢獻。\u003c\/h4\u003e\n\u003ch4\u003e前年，他更出版屬於自己的散文及藝術評論結集，名為《在熾烈的日光下我所誤讀的一切》，「想將自己面對罕有病、一啲求醫無門嘅經驗裏面，表達一啲經驗。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-12.jpg?v=1774512156\"\u003e\u003c\/p\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-13.jpg?v=1774512156\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u003cimg alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e港無罕病政策 難統計數據\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e不同於美國、台灣及日本等地，港府自2013年開始，以國際間未有一致定義、數據不足等，拒絕界定何謂「罕見病」，導致不少罕病患者難以得到足夠支援，亦無法統計罕病數據及建立資料庫。\u003c\/h4\u003e\n\u003ch4\u003e罕見疾病聯盟（HKARD）業務發展主任賴家衞（Terry）表示，罕盟自2014年成立至今，共確認約40種罕見病，會員人數約100人，「勁馳呢一類屬於未能確診的疾病，（佔罕盟人數）係得百分之五，但我哋相信社會上有好多潛藏住未確診疾病嘅患者，佢哋知道身上有一堆病，但係搵唔到方法。」\u003c\/h4\u003e\n\u003ch4\u003eTerry希望港府早日就罕病下定義，降低申請傷殘津貼的門檻，並在醫生培訓上「下功夫」，讓他們更容易接觸罕見病的資訊，「會唔會有個機制登記呢啲未確診病人嘅資料，當社會上再發現同類病人，就可以有更好嘅整合。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e採訪及撰文：梁劍紅、李楚瑩\u003cbr\u003e編審：梁劍紅、王煜棋\u003cbr\u003e硬照攝影：Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Sam Chan \u0026amp; Sea.Pho.Yea\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"盧勁馳","offer_id":43243486576758,"sku":null,"price":80.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3603-00.jpg?v=1774511038"},{"product_id":"長不大的天使-陳詠寧","title":"長不大的天使 - 陳詠寧","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/1w407C8Ebno\" title=\"透視罕見病：天使綜合症　長不大的天使 帶笑落入凡間\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「我叫陳詠寧，今年8歲，我愛笑愛叫、愛我的爸爸媽媽妹妹……」\u003cbr\u003e這是一段無法說出的話句，但，也許是爸媽最盼望聽到的心聲；\u003cbr\u003e她，愛咧嘴而笑，卻不懂說話；\u003cbr\u003e她，四肢健全，卻不能自理；\u003cbr\u003e天使讓人既憐且懼，全因罕見得無法根治，欲救無從；\u003cbr\u003e小天使無畏無懼，落入凡間，為平凡的夫婦展開不平凡的人生。\u003c\/h4\u003e\n\u003ch4\u003e「只要佢識點頭應我、自己食嘢、去廁所、着鞋……都開心到不得了！」8歲的詠寧，不懂說話、不能自理，嚴重智障…… 她常無故發笑，甚至流出口水，只因她控制不到口肌。\u003c\/h4\u003e\n\u003ch4\u003e這一家四口，沒愁雲慘霧，他們沒被擊倒！8年前小天使的誕生，讓爸媽經歷了人生最開心的半年。隨之，是歷練的展開……\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-01.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-22.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e針插滿頭 爸媽同哭\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「婚前、產前檢查做足，BB又足月，所有嘢又正常。」世事難料，詠寧7個月大時，母嬰健康院發現她斜視，又不能坐正，面對陌生人格外緊張。醫生懷疑詠寧腦部出問題，媽媽Joe坦言不能接受，「佢好精靈，成日笑㗎喎，冇乜嘢呀。淨係瞓得差、食得唔好，可能我哋新手唔識湊啫。」\u003c\/h4\u003e\n\u003ch4\u003e照超聲波、腦掃描，抽骨髓……「每日返到屋企，見到枱面十幾張卡片，話俾你聽邊個名醫好、邊個醫師好，咩都會去試。中醫、針灸、脊醫、物理治療、職業治療……」詠寧到過的門診科目多不勝數，「未計私家醫生，淨係覆診都六、七科。」\u003c\/h4\u003e\n\u003ch4\u003e「我哋帶佢去針灸，8個月大，插到成頭都係針，插40分鐘，我哋兩公婆喊足40分鐘。」兩口子求診亦常摸門釘，無功而還，常徘徊於希望和失望之間。\u003c\/h4\u003e\n\u003ch4\u003e經歷一年多的難熬、矛盾，最終驗DNA才確診天使綜合症。「見到佢個成長線一路一路咁樣，越輸越遠。」看着女兒日漸倒退，爸爸Joson不堪回首，「係漫長、徬徨，痛苦……」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border-image: initial; height: 1873.6px; border: medium none currentcolor;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 938.8px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 938.8px; border: medium none currentcolor;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-02.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 934.8px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 934.8px; border: medium none currentcolor;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-03.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「癲佬咁抱住女求救」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e確診了病症，更不能鬆懈。「試過突然發高燒，10鐘內由30度飈到上40度。抱佢去診所嘅5鐘車程，佢就休克暈咗。我好似癲佬咁抱住個女衝入商場係咁嗌，叫人幫手。」\u003c\/h4\u003e\n\u003ch4\u003e抽筋常見於天使綜合症者，最叫家長們困擾。「八、九成患者都會有抽筋，佢一抽筋，你冇嘢可以做到，但最緊要保護到佢安全，睇下需唔需要即刻急救。」Joe表示，抽筋還會令技能喪失，她舉例：「明明可以自己食嘢，抽完筋後就會倒退，做唔番。佢本來可以嘗試去洗手間，跟住抽過一次筋後唔肯再坐廁所。到依家都未肯坐番，講緊係四年嘅事。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-05.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-06.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e失控自殘 以頭撼牆\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e然而，此症暫無藥物可根治，主要靠治療和訓練改善患者的起居。除了全天候無微不至的照料，小天使的情緒亦需特別關注。「佢只有2至3歲智商，表達唔到心中所想或做唔到，就會情緒失控！」詠寧逼使父母就範的常用招數就是：先瞓地，再拍打，繼而自殘等，最後得逞。Joson指源於其痛感低，至見血、非常痛時才會停止自殘，「非常倔強，抗拒起上嚟就忘我。」\u003c\/h4\u003e\n\u003ch4\u003e採訪期間，原本笑至「咔咔聲」的詠寧，突然扭計大哭，還隨即以頭撼牆至「嘭嘭聲」；可是，我們卻無法幫上，因為實在不知那刻她在想甚麼。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-04.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-07.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e湊佢一年 老咗十年\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e為照顧詠寧，不但要舉家搬屋遷就，Joson更熬上多個不眠之夜，免疫系統開始出問題，多種病症湧現。他試過胃出血，嚇倒了醫生：「嘩！你點忍到咁痛？你即刻要去輸血，你貧血，即刻要入院。」Joson卻拒絕：「唔得呀，我要接囡放學，我唔可以入醫院！」最後，只好先服藥丸緩和病情。\u003c\/h4\u003e\n\u003ch4\u003e不久，他又得了面癱、生毒瘡等。雖然他們相信中醫慢慢調理之法，但為照顧詠寧，「唔得喎！唔慢得喎！就猛食西藥。快呀！最緊要快呀醫生！」這超能爸爸不禁嘆道：「湊咗佢一年，老咗十年。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-08.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-09.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「前世唔知做咗啲咩」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「前世唔知做咗啲咩」、「返嚟攞債」、「呃人、扮慘、攞着數」......詠寧的病固然叫爸媽費盡心神，惟旁人的不善目光、尖酸刻薄的批評，同樣是一道刺。有些病患家庭甚至會選擇躲藏，不敢伸出求助之手。\u003c\/h4\u003e\n\u003ch4\u003e冷語冰人，但Joson和Joe繼續積極，絕不逃避，百分百接受家中這位小天使。Joson認為沒人喜歡被看扁，亦不會小覷女兒，「當你介意人哋點睇你個女，連你自己都介意嘅時候，你個女會有咩感受？」\u003c\/h4\u003e\n\u003ch4\u003e「每個家庭都有自己嘅問題；每個小朋友都有啲叻啲，有啲唔叻。最重要係我哋一家人，無論乜嘢情況下都一齊行呢條路，冇嘢緊要得過一家人開開心心、齊齊整整！」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-10.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-11.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e妹妹出現 重歸正常\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e詠寧還未查出病因，Joe意外懷上細女Cherry，「我一個都未必照顧到喎，點算呀？！」他們更擔心的是，怪病會否再度來襲，倆口子經多番掙扎和檢驗，終衝破心理關口，決定順天而行。幸好，妹妹的降臨為全家打了一枝強心針，帶來很多正能量。\u003c\/h4\u003e\n\u003ch4\u003e但詠寧或多或少也影響了妹妹的成長，妹妹無意識家姐有異，更模仿她，「佢試過返一年學冇講過一句說話，因為家姐唔講嘢」。兩姊妹亦會不時上演「爭Daddy大戰」爭寵。如去旅行，妹妹會說：「你抱咗家姐4日；你抱咗我4分鐘。你記唔記得自己仲有個女㗎？」令Joson和Joe哭笑不得。\u003c\/h4\u003e\n\u003ch4\u003e後來妹妹漸漸懂事，開始配合詠寧，亦會很保護和愛錫家姐。「同佢出街，一啲旁人嘅眼光、對家姐嘅唔友善，佢會好嬲，會好情緒化……會觸動到佢，都影響到呢個小朋友嘅心理質素。」\u003c\/h4\u003e\n\u003ch4\u003e兩夫婦很慶幸Cherry的出現，令原本封閉於小數社區的家庭，變成走出正常社區的一家四口。而Joe的教養心態改變良多，她坦言，當初懷上詠寧，有很多期望和想像，得知有事一刻如晴天霹靂，直插谷底。Joe形容養育詠寧猶如經歷風浪，故懷第二胎的心態已轉，「唔強求、唔鋪排。原本應該緊張嘅事都好淡然，順天意行。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border-image: initial; height: 1825.22px; border: medium none currentcolor;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 444.175px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 444.175px; border: medium none currentcolor;\"\u003e\u003cimg style=\"width: 513px; height: 407px; object-fit: cover; min-height: 400px; float: right;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-12_3777bade-eb2e-48d1-9c95-3698dee5a1cf.jpg?v=1774576266\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 425.712px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 425.712px; border: medium none currentcolor;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-13.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 477.4px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 477.4px; border: medium none currentcolor;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-14.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 477.938px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 477.938px; border: medium none currentcolor;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-15.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e別因障礙 扼殺行動\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「既來之，則安之」；日子難熬，他們學會釋懷。這份淡然得來不易，最初Joe不能接受事實，「做做吓嘢都喊，連病名都從未聽過，冇藥醫，永遠都唔會好番，佢一世就咁！」面對家人，她只是輕描淡寫地解釋這沉重的事。「你會聽得出佢唔敢傷心，但你知道佢好傷心。」Joe當時萬念俱灰，自己亦很封閉，更遑論告訴別人。後來，她逐步敞開心扉，痛定思痛，透過資料搜集了解天使的習性和特質，針對詠寧的需要，為她安排一切。\u003c\/h4\u003e\n\u003ch4\u003eJoson覺得「照顧呢個小朋友，一定要多嘗試，唔好怕失敗，要屢敗屢戰」。面對當前困難，他們不退縮，而是硬着頭皮超越難關。「出街食嘢，逼同多人時…詠寧就會失控、掃嘢、搗亂，但唔會因為有障礙而扼殺行動！」他們改為選擇人流少的時間到餐廳，如下午茶、改早點吃晚餐等。看電影也不能如常，因害怕會騷擾別人或令天使們受驚，那便集合其他天使一起包場觀看。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-16.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-17.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-18.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-19.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e尋同路人 邁向曙光\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e現時香港約有五十多宗天使綜合症，患者壽命與常人無異，使家長憂慮，「成日都話......遲你一日啦。」Joson和Joe成立基金會，盼尋同路人互相扶持和交流，並鼓勵病患家庭不要匿藏，因為「當你自己唔去收埋自己，好主動話俾人聽有咩需要嘅時候，人哋先可以幫到你。」\u003c\/h4\u003e\n\u003ch4\u003e政府新一年度的財政預算中，將透過關愛基金發放的藥物資助金額增至5億元。天使綜合症雖暫未有醫治藥物，但Joe認為「對於我哋嚟講係一個曙光」，而Joson則充滿希望，「起碼政府或社會大眾開始對呢方面有所關注；隨住科技嘅進步，難保他朝有一隻藥可幫到天使綜合症嘅小朋友。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-20.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-21.jpg?v=1774517589\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：甚麼是天使綜合症？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e因第15號染色體的基因受到破壞而引起；發病率為15,000份之一，在香港每年約有3至5個確診病例。\u003c\/span\u003e\u003c\/h4\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e主要病徵：\u003cbr\u003e1. 發育遲緩\u003cbr\u003e2. 語言障礙\u003cbr\u003e3. 僵硬及不穩的步態\u003cbr\u003e4. 頻繁顯露開心的神態\u003cbr\u003e5. 癲癇\u003cbr\u003e6. 睡眠障礙\u003cbr\u003e7. 斜視\u003cbr\u003e8. 口部寬闊、牙齒疏離\u003cbr\u003e9. 餵養問題、吐舌；吸啜／吞嚥障礙\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e採訪及撰文：梁劍紅、莫雅瑜\u003cbr\u003e編審：梁劍紅\u003cbr\u003e硬照攝影：Sea.Pho.Yea\u003cbr\u003e影片製作：Lifewire、Sea.Pho.Yea、Jan Ngai\u003cbr\u003e\n\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"陳詠寧","offer_id":43243486642294,"sku":null,"price":170.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3602-00.jpg?v=1774513762"},{"product_id":"衝破自閉的牆-炫匡","title":"衝破自閉的牆 - 炫匡","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/eGxVgE_cVC8\" title=\"【#透視罕見病】衝破自閉的牆 苦等三年的一聲媽媽\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e外出吃飯、看電影……平常的家庭樂，但對 Carmen 一家四口來說，卻似是遙不可及的奢想……\u003cbr\u003e只因她有一個患上自閉症的兒子。\u003c\/h4\u003e\n\u003ch4\u003e3歲半的炫匡相當好動，表情多多，興奮時會手舞足蹈，甚至突然尖叫，「佢好鍾意睇會轉嘅嘢，玩火車（玩具）可以好專注，自己玩一個鐘。初時以為佢好好湊，唔使理佢…… 」\u003c\/h4\u003e\n\u003ch4\u003e「佢唔講嘢，單字都唔講，只係『咿咿呀呀』講BB話。」媽媽Carmen初時還以為炫匡與8歲哥哥一樣有學習遲緩，「哥哥係正常小朋友，都係2歲半先講單字，之後一爆就爆到去句子。」\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3237-00.jpg?v=1774577286\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e唔望人 活喺自己世界\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e豈料「1歲半去健康院檢查，醫生話佢唔望人，活喺自己嘅世界，2歲半確診有自閉症。」\u003cbr\u003eCarmen回想那一刻，「（腦海）空白一片，眼淚係咁流，去見醫務社工排S位（特殊幼兒中心），但社工講乜，我完全聽唔入耳。」\u003c\/h4\u003e\n\u003ch4\u003e面對孻子患病那種錐心之痛，Carmen只能選擇背人垂淚「等兩個小朋友瞓晒覺，我就喺房度喊.」幸得丈夫支持和鼓勵，心情總算逐漸平復，「佢話不如開心啲去面對，積極啲搵幫助，會唔會搵啲 playgroup 畀佢學習下群體生活。」\u003c\/h4\u003e\n\u003ch4\u003e抹乾眼淚、認清事實，Carmen 決心上網搵資料幫助愛兒，最終讓她找到一間專門協助自閉症兒童的慈善機構，還可以讓炫匡免費接受治療一個月。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「第一次叫我做媽咪！」\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「（炫匡）3歲之前唔識講嘢，最多只係識講哥哥……（治療）一個禮拜左右，我去接佢放學，佢行出嚟同我講『媽咪！』嗰一刻好開心，就嚟三年，第一次叫我做媽咪。」Carmen憶述那一聲「媽咪！」，還禁不住帶點激動。\u003c\/h4\u003e\n\u003ch4\u003e「嗌媽咪」只是炫匡進步的起點，「爸爸、車車、餅餅，自己叫乜嘢名、住喺邊，有幾多兄弟姊妹都識得講，冇諗過會進步得咁快。」\u003c\/h4\u003e\n\u003ch4\u003e說話雖不算多，但炫匡活潑愛笑，採訪期間，他專一地不斷玩滑梯，完全地自得其樂，之後又跟媽媽一起踢波，笑到「卡卡聲」；然而，當他遇上不合意事時，情緒亦會隨時大逆轉嚎哭「扭計」。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3237-02.jpg?v=1774579562\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「你個小朋友好嘈呀！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eCarmen 坦言，炫匡較之前已有顯著改善，過去曾遭受過不少旁人的目光、埋怨……\u003cbr\u003e「搭車遇上塞車，佢冇耐性就會叫。試過喺巴士度俾人話：『你小朋友好嘈呀，可唔可以叫佢唔好咁大聲呀！』」\u003c\/h4\u003e\n\u003ch4\u003e又試過到餐廳食飯，「佢唔鍾意就會大嗌，嗌到成間餐廳嘅人都知道，跟住我就成為焦點，俾人望住。」因為這種擔憂，Carmen 從未試過帶兩個兒子到戲院看電影，「我唔敢呀，變相連哥哥都冇得去睇。」\u003c\/h4\u003e\n\u003ch4\u003e但Carmen從不怪別人，只希望大家對自閉症多一分了解，少一分誤解，「普通小朋友『由一到二』可能好快，一日就可以；但自閉症小朋友可能要教10日，會有個過程，希望大家包容。」\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3237-03.jpg?v=1774579562\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003cp\u003e\u003cimg alt=\"\"\u003e\u003c\/p\u003e\n\u003cp\u003e \u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「細佬自閉症大晒咩！」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「點解你成日睇住細佬，冇時間陪我，你錫晒細佬、就晒細佬……細佬自閉症大晒咩！」8歲的哥哥，其實痛錫弟弟，平時最愛黏着玩耍，但當父母將注意力都投放在弟弟身上時，哥哥縱使心裏明白，但難免有些「呷醋」。\u003c\/h4\u003e\n\u003ch4\u003e「其實佢都係得8歲，我明白嘅。」Carmen難掩心中的內疚，「炫匡去中心上堂，變相哥哥要自己去補習社，自己放學。」她理解哥哥的不滿，於是細心解釋弟弟有特別需要，「我成日同佢（哥哥）講，你哋兩兄弟要相親相愛，細佬渣少少，你要幫助佢。」\u003c\/h4\u003e\n\u003ch4\u003e慶幸哥哥懂事，即使屢次被炫匡搶玩具而大動肝火，兩兄弟甚至爆發「罵戰」，但Carmen眼中，兩兄弟的感情還是相當要好。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e訓練費昂貴 盼獲支援\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e目前，炫匡也有使用政府提供的免費到校學前康復服務，惟Carmen覺得成效不彰，「一個禮拜得一堂，（訓練）半個鐘，冇乜顯著進步，靠喺屋企繼續同佢訓練。」\u003c\/h4\u003e\n\u003ch4\u003e想到將來，Carmen的腦海更充滿問號，「唔知佢會唔會進步，唔知佢可唔可以照顧到自己，我都會百年歸老㗎嘛！」\u003c\/h4\u003e\n\u003ch4\u003e望着眼前的炫匡，Carmen希望他長大後能幫助更多自閉症患者；但面對目前，Carmen的願望卻更簡單，「我淨係想佢放學出嚟話畀我聽，今日喺學校發生乜嘢事、有乜嘢趣事同我分享。」\u003c\/h4\u003e\n\u003ch4\u003eCarmen明白到，要完成此簡單願望，只有一個途徑，「自閉症小朋友真係需要好多錢去做訓練，語言、小肌肉、大肌肉，全部都要做，要7,000至8,000蚊一個月，真係afford（負擔）唔到！」她希望政府提供更多支援，幫助自閉症兒童家庭。\u003c\/h4\u003e\n\u003ch4\u003e你，願意伸出援手，為他們出一分力嗎？\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e循序漸進 重複練習\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e炫匡進步神速，因為提供治療的愛培自閉症基金用上應用行為分析學習法（Applied Behavior Analysis，簡稱ABA），是將一組複雜的命令，有系統地拆成簡單步驟，一步一步、循序漸進，使自閉症患者能夠逐步跟從；提升他們的學習動機、溝通、語言、社交行為，認知能力；並透過獎勵激發他們的學習動機。\u003c\/h4\u003e\n\u003ch4\u003e行為分析監督主任劉彥嫺（Quincy）表示，當炫匡能講到一句完整句子，就會提高練習要求，「我哋溝通會望住人，佢哋講嘢會咁樣（左顧右盼），然後話『我要個波』。所以我哋練嘅時候要有誘因，等佢有動機望住我。佢真係好想要個波，咁佢就會一路講，等佢望住我嗰下就即刻畀佢，佢就會知道『哦，原來望住人先有嘅~』」\u003c\/h4\u003e\n\u003ch4\u003e此外，機構還會透過其他小遊戲訓練他的記性、模仿能力、甚至安坐在位置上，而每一個訓練都必須重複練習。\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3237-04.jpg?v=1774579562\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e至怕外人「加把嘴」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e行為分析監督主任劉彥嫺表示，與自閉症兒童相處最重要是包容。一般人會因為別人的社交期望而改變自己，他們卻不會，「因為佢哋唔明白啲規矩」。\u003c\/h4\u003e\n\u003ch4\u003e劉彥嫺又指，父母管教自閉症兒童時，最怕外人「加把嘴」，「好影響家長心情，家長教佢哋（自閉症子女）搣甩一啲固執性行為，家長都要堅持，但係外人唔知頭唔知路講咗一句，可能打亂咗成個月嘅訓練。」\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"炫匡","offer_id":43243486740598,"sku":null,"price":60.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3237-00.jpg?v=1774577286"},{"product_id":"中電地盤爆水管-岑燦榮-吳建明-霍鑑秋","title":"Deadly industrial accident - Cen Canrong ; Fock Kam-chau ; Wu Jianming","description":"\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3151-01.jpg?v=1774581564\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch4 class=\"widget xhec\"\u003eThree workers died on Monday after a five-metre tunnel they were working in at a roadworks site in Hung Hom suddenly filled with water, apparently from a burst sewerage pipe.\u003cbr\u003e\u003cbr\u003eTwo workers were pulled out unconscious by emergency services shortly after the accident happened early Monday afternoon, but were later confirmed dead at Queen Elizabeth Hospital.\u003cbr\u003e\u003cbr\u003eThe discovery of the poisonous gas hampered rescue efforts and it took almost two hours for the third man to be pulled out.\u003cbr\u003e\u003cbr\u003eTheir deaths sparked an investigation by police and the Labour Department into whether the men were equipped with safety gear. In their rescue attempt, firefighters found the three men were not wearing safety belts.\u003cbr\u003e\u003cbr\u003eThe three men – Cen Canrong, 23, Fock Kam-chau, 49 and Wu Jianming, 48 – entered the tunnel by way of a manhole five metres deep in the CLP Power site at the junction of Gillies Avenue South and Baker Street, Hung Hom, after their lunch break.\u003cbr\u003e\u003cbr\u003eSource: Comprehensive report\u003c\/h4\u003e\n\u003cdiv class=\"clear hwsep\"\u003e\u003cbr\u003e\u003c\/div\u003e\n\u003cp\u003e\u003cspan\u003e—————————————————————————————————————————————————————\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e*Hope you lend a helping hand to support the families of the deceased get through this hard time.\u003c\/h3\u003e\n\u003ch3\u003e\u003cspan\u003eDonations of HK$100 or more are tax deductible.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e-If you want the receipt or donate to specific cause\/campaigns, please download and fill in the following form, together with bank receipt or cheque, email to\u0026nbsp;\u003c\/span\u003e\u003ca href=\"mailto:info@lifewire.hk\" rel=\"noopener noreferrer\" target=\"_blank\"\u003einfo@lifewire.hk\u003c\/a\u003e\u003cspan\u003e\u0026nbsp;or mail to Lifewire Foundation Limited.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e- Please download the form “Application for Donation Receipt” as below:\u0026nbsp;\u003c\/span\u003e\u003ca href=\"https:\/\/www.lifewire.hk\/uploads\/docs\/59e4736a994581.pdf\" rel=\"noopener noreferrer\" target=\"_blank\"\u003eApplication for Donation Receipt.pdf\u003c\/a\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eLifewire has officially registered as a Hong Kong government recognized non-profit charitable institution at June 2015. (No.：91\/14057)\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eList for reference:\u0026nbsp;\u003c\/span\u003e\u003ca href=\"http:\/\/www.ird.gov.hk\/chi\/pdf\/c_s88list.pdf\" rel=\"noopener noreferrer\" target=\"_blank\"\u003ehttp:\/\/www.ird.gov.hk\/chi\/pdf\/c_s88list.pdf\u003cbr\u003e\u003c\/a\u003e\u003cbr\u003e\u003cspan\u003eEnquiry: 3758 8701\u003c\/span\u003e\u003c\/h3\u003e","brand":"Lifewire HK","offers":[{"title":"Cen Canrong ; Fock Kam-chau ; Wu Jianming","offer_id":43243486904438,"sku":null,"price":50.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3151-00.jpg?v=1774581511"},{"product_id":"舞動女孩-徐嘉怡","title":"舞動女孩 - 徐嘉怡","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/te4q8pttUIA\" title=\"舞動女孩……脊彎又如何？\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e舞動女孩…… 脊彎又如何？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「佢唔會停，好似馬騮仔咁，好百厭！」9歲的徐嘉怡，於媽媽眼中是如此的活潑好動。5歲前，這馬騮仔與其他小朋友無異，上學讀書、下課玩耍…… 沒料到背部慢慢出現不對稱，越來越彎，側面看更成「S」狀。\u003c\/h4\u003e\n\u003ch4\u003e未幾，嘉怡左腳突無力步行，動輒跌倒，亦無法孭書包。「拎滑板車拖佢返學！」媽媽憶述。當時，嘉怡留醫屯門醫院40日也查不出病因，直至轉介到大口環根德公爵夫人兒童醫院，才確診患上脊柱後側凸，且胸椎達83.2度、腰椎已達51.6度。\u003c\/h4\u003e\n\u003ch4\u003e鋼針鎖頭 拉直胸頸脊 嘉怡需植入脊椎矯正磁力棒，但手術前需經歷3個月的顱骨牽引治療， 嘉怡頭顱被鎖上鋼針，戴上猶如「金剛箍」的固定儀器 (Halo Cranial Tractor)，僅38磅的身軀再透過槓桿支架連接19磅的沙包，拉直她的脊骨，直到她的骨骼調校對位完成，才可進行手術。\u003c\/h4\u003e\n\u003ch4\u003e「之前佢前胸凸起，戴咗箍後慢慢回復正常，戴箍前頸都縮咗落去，宜家條頸長番。」看着女兒頭上一根根粗大鋼針，彷彿也刺痛媽媽的心扉，「冇辦法啦，為佢好啫！」戴上「金剛箍」初期，嘉怡嘔吐大作，「第一日唔可以食嘢，第二日飲湯就嘔，第三日都係嘔，第四日先慢慢好番。」\u003c\/h4\u003e\n\u003cp\u003e\u003cmeta charset=\"UTF-8\"\u003e \u003cmeta name=\"viewport\" content=\"width=device-width, initial-scale=1.0\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\n\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-03.jpg?v=1774583593\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-04.jpg?v=1774583593\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-06.jpg?v=1774583593\"\u003e\n\u003c\/div\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e雙手砌心 媽媽甜在心\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e訪問期間，戴着「金剛箍」的嘉怡似乎不大起勁，媽媽指她先天顎裂，影響咬字發音，多以點頭或搖頭回答提問，更不時指着頭嚷着「好痕呀、好痕呀。」幸嘉怡從未因患病而氣餒，反安慰憂心忡忡的媽媽，「唔使驚，做完手術會好番！」\u003c\/h4\u003e\n\u003ch4\u003e「金剛箍」偶爾為嘉怡帶來劇痛，跟媽媽擁抱也不行；不過，問她最想做甚麼事？嘉怡即「醒神」起來直呼「跳舞囉！」還即投入地擺動，儘管被緊箍着、每一動均把儀器扯動得「吱吱響」，她還是開懷地轉了一圈又一圈，更擺出「心心」手勢，媽媽看在眼裏，該也甜在心頭。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-01.jpg?v=1774583593\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-05.jpg?v=1774583593\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e熱愛上學 康復路漫長\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「我要返學！」這是嘉怡的心願，亦同樣是媽媽的期望，「我最大心願係醫好佢，等佢可以返正常學校。佢好鍾意返學，佢覺得好開心。」\u003c\/h4\u003e\n\u003ch4\u003e數月前，嘉怡已拆除「金剛箍」並植入一對近12萬的脊椎矯正磁力棒來支撐身體。不過，其康復路還相當漫長，嘉怡的年邁爸爸已沒工作，面對日後龐大的醫療費用，前路頓變得迷惘。\u003c\/h4\u003e\n\u003ch4\u003e你，願意伸出援手，協助嘉怡的復康路，讓她繼續開心跳舞嗎？\u003c\/h4\u003e\n\u003ch4\u003e註：\u003cbr\u003e脊椎矯正磁力棒可取代每半年開刀1次的傳統療法，患者每月只需覆診1次，醫護人員可透過體外的手持裝置來調整植入體內的磁力棒，無須任何麻醉；病童可隨即如常回校上課。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-07.jpg?v=1774583593\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-08.jpg?v=1774583593\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e","brand":"Lifewire HK","offers":[{"title":"徐嘉怡","offer_id":43243487101046,"sku":null,"price":40.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3051-02.jpg?v=1774582892"},{"product_id":"坎坷小姊妹-班彩鳳-班彩娥","title":"坎坷小姊妹 - 班彩鳳;班彩娥","description":"\u003cp\u003e\u003ciframe title=\"坎坷小姊妹 何日可再聚\" src=\"https:\/\/www.youtube.com\/embed\/0TUmk_aToxc\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e彩鳳生於廣西河池市大化縣六也鄉一個貧窮家庭，爸爸是農夫，全家僅靠一畝多的粟米田維持生計，媽媽於2016年年初難產去世，年邁祖母因而精神失常，最不幸的是2歲妹妹彩娥身患頑疾，缺乏營養且身體瘦弱……二月，六也鄉政府人員發現彩娥咳嗽不停，擔心再拖延後果會不堪設想，遂將彩娥送入鄉衞生院，但彩娥當時已昏迷不醒。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不求醫 爸僅有5元\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e衞生院的醫生隨即將彩娥送到縣醫院兒科搶救，而班爸爸身上當時僅有5元，這正是他遲遲不將小女兒送院的原因。\u003c\/h4\u003e\n\u003ch4\u003e彩娥入院18日後，病情終穩定下來，並獲轉送至廣西區醫院。該院診斷她患有支氣管炎肺炎、肺部真菌感染、營養不良、運動發育遲緩、先天性喉軟骨發育不良、氣管軟化症及左主支氣管開口狹窄7個病症。\u003c\/h4\u003e\n\u003ch4\u003e幸好，彩娥生命力頑強，加上獲內地雲彩行動伸出援手，全程跟進病情，經過49日的漫長治療，彩娥終於離開醫院。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e不乏關懷 炎夏穿厚衣\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e正當班爸爸帶着彩娥回家時，打開大門的景象卻令人鼻酸、心痛。與失常嫲嫲居於同一屋簷下的彩鳳，因乏人照顧，竟然在4月的悶熱天氣下，仍穿着絨衣棉褲。\u003c\/h4\u003e\n\u003ch4\u003e隨班爸爸回家的雲彩行動人員見狀，即上前噓寒問暖：「覺得熱嗎？」「在家吃得飽嗎？」「爸爸和妹妹回家了開心嗎？」無奈，這孩子始終面無表情、隻字不答。這也難怪，彩鳳缺乏母愛、爸爸要照顧患病妹妹、嫲嫲則精神失常，在無溝通、無安全感的環境下，沉默寡言的彩鳳彷彿圍上金鐘罩，聽不入、穿不透。\u003c\/h4\u003e\n\u003ch4\u003e原以為一家團聚，豈料事情在兩星期後出現變化。彩娥被送往廣西醫科大學附屬醫院作進一步檢查和治療時，醫生發現彩娥有半個肺部沒有肺泡，而且懷疑她有肺結核，需吃藥後再作評估，決定是否切除肺部。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e入住中心 終展歡顏\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e面對龐大的手術費用，班爸爸無計可施，家境貧困，加上無人照顧彩鳳，班爸爸決定將彩鳳送到雲彩中心生活，「我一定好好將孩子帶大，讓她們讀書，一定」。\u003c\/h4\u003e\n\u003ch4\u003e彩鳳初到中心時，表現膽怯，晚上更不敢睡覺；即使有看護人員陪睡，她也不敢闔上眼睛放心入眠，經過一段時間的習慣，信任度漸漸增加，才敢獨個兒睡覺。\u003c\/h4\u003e\n\u003ch4\u003e在這裡，彩鳳終於有人照顧、有人關心，她亦找到了安全感，小臉蛋終展現了笑容。此刻的彩鳳愛笑、說話比之前多，中秋節時更與其他哥哥姐姐在一起唱歌跳舞！\u003c\/h4\u003e\n\u003ch4\u003e彩鳳入住雲彩中心後，總算有一個新開始：惟妹妹彩娥的病況，仍然充滿未知數。倘若沒有醫療資助，彩娥的路該如何走下去？彩鳳又是否需一直與嫲嫲、爸爸及妹妹分離呢？\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\n\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e雲彩行動\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e電話：(852) 3488-4395\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e傳真：(852) 3016-8685\u003c\/span\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e電郵：info@slining.org\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"班彩鳳;班彩娥","offer_id":43296257540214,"sku":null,"price":30.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/2957.jpg?v=1776302570"},{"product_id":"脆骨少女-蘇雨欣","title":"脆骨少女 - 蘇雨欣","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】脆骨少女：我不認輸\" src=\"https:\/\/www.youtube.com\/embed\/7oRoCGbb5ew\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e「天地雖寬　這條路卻難走　要蒼天知道　我不認輸」\u003c\/h4\u003e\n\u003ch4\u003e從前，有一位女孩，從小就骨折了六十多次，\u003cbr\u003e十五歲，卻僅如五歲的身軀，\u003cbr\u003e曾經，四肢彎曲，連站立也不行，\u003cbr\u003e但，女孩沒有埋怨，只默默哼着：\u003c\/h4\u003e\n\u003ch4\u003e「感恩的心　感謝命運　花開花落　我一樣會珍惜」\u003cbr\u003e她，是脆骨症患者 -- 蘇雨欣。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e初生8個月即骨折\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e15年前，蘇家開開心心迎接新生命來臨；殊不知，同時附帶着沒盡頭的噩夢。雨欣8個月大出現首次骨折，還一次過骨折了三個地方；但生於醫療設備落後的農村，醫生無從入手。直到4、5歲，雙腿和手臂開始變形、彎曲，輾輾 轉轉求助過多間醫院，最後才確診為脆骨症。醫生說：「帶回去養着吧！能養到甚麼時候，就養到甚麼時候吧！」輕輕的一句，重重的刺中要害。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e身上有8座小拱橋\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「很絕望、很無助.. 真的是走投無路！」一家人不敢接受現實，卻未曾浮起放棄念頭，堅持費盡氣力、用心照顧雨欣。也許，你從未想過，穿衣服會跟戰鬥掛鈎；於雨欣一家而言，這正是他們每天必經的障礙。\u003c\/h4\u003e\n\u003ch4\u003e雨欣曾這樣形容自己：「我身上有八座小拱橋，彎彎曲曲的，穿衣要非常小心，慢慢地穿，慢慢的把它套進去。」彎曲的，是雨欣的四肢，每次穿衣均需媽媽幫忙，至少得花上10多分鐘；冬天穿衣服則更達半小時以上。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e出門看病 骨折回家\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「每次帶着她出門看病，結果總帶着骨折回來！」這個「瓷娃娃」，除了頭骨，幾乎所有地方都骨折過，暫時多達60次。惟一家人從未動搖，不斷上網尋找脆骨症資料，還帶雨欣從福建跑到天津、北京的骨科醫院檢查。不過，農村崎嶇不平的山路，一拐彎、一煞車，雨欣就骨折了。一家人每次帶着希望出發，最終只能帶着失望回家。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e手術連連 隨時肺炎\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e還幸，8歲時，天津一位醫生看到雨欣的情況，二話不說就趕到福建為其雙腿動手術；過了1、2年，再做了另一次手術。滿以為一家就此重生，豈料手術後雨欣卻一直氣喘，咳嗽未停；醫生指若不施手術，脊柱側彎積壓肺部，隨時感染肺炎。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e收入耗盡 親友白眼\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e無奈的是，蘇家總收入僅2,000元人民幣，之前的手術已花近10萬元，向親友借錢、承受閒言閒語已見怪；眼見雨欣病情無寸進，親友都勸他們放棄。\u003c\/h4\u003e\n\u003ch4\u003e「心情如翻倒了五味瓶！放棄？為人父母做不到…卻又很悲哀。她已經很不幸、很痛苦了！」再多的白眼、再多的閒言閒語，相較雨欣承受的痛苦，根本微不足道。\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e氣喘 卻找出一片天\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e出不了門、走不了路，去不了讀書，爸媽就讓她在家裡彈琴；可是，彈著彈著就骨折，故又動了四次手臂手術。其後，雨欣又再氣喘，醫生說要想辦法改善其功能不好的肺部，爸媽就讓她唱歌；從此，小妮子卻找到屬於自己的一片天：「雖然我身體跟他們不一樣，但我還會唱歌，還會彈琴。」\u003c\/h4\u003e\n\u003ch4\u003e「每次走在路上，回頭率幾乎是百份百。」但並沒因而減少帶雨欣外出，爸媽甚至會刻意讓她跟人家出外相處。「希望她做一個身體雖殘疾，但心裡絕對是堅強、健康的孩子。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e疤痕滿身 心存感恩\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e一身疤痕，臉上卻老是一副悠然自得，雨欣坦言曾經難受、曾經自卑，「為甚麼會這樣？為甚麼和其他人不一樣，能跑、能跳、游水…但現在不會了。因為，雖然我身體有缺陷，但我的心裡跟他們一樣，就是能自理，不比他們差。」\u003c\/h4\u003e\n\u003ch4\u003e「手術九次都已經經歷過來，沒甚麼可怕。」樂天、勇敢，這女孩面對無法根治的頑疾，沒半點怨言；面對手術，沒半點恐懼；面對未來，充滿希望。經友人介紹下，雨欣被香港弱能兒童護助會安排再進行手術。她只盼手術後能跟父母一同走到醫院外的世界。\u003c\/h4\u003e\n\u003ch4\u003e「能自己走、能站起來、能一起出去玩、能走能跳…爸爸媽媽太辛苦了。我想自強自力，長大後能報答他們。」你，願意伸出援手，助雨欣走向更闊更大的世界嗎？\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e感恩的心\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e我來自偶然　像一顆塵土\u003cbr\u003e有誰看出我的脆弱\u003cbr\u003e我來自何方　我情歸何處\u003cbr\u003e誰在下一刻呼喚我\u003cbr\u003e天地雖寬　這條路卻難走\u003cbr\u003e我看遍這人間坎坷辛苦\u003cbr\u003e我還有多少愛　我還有多少淚\u003cbr\u003e要蒼天知道　我不認輸\u003cbr\u003e感恩的心　感謝有你\u003cbr\u003e伴我一生　讓我有勇氣作我自己\u003cbr\u003e感恩的心　感謝命運\u003cbr\u003e花開花落　我一樣會珍惜\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"蘇雨欣","offer_id":43296281854070,"sku":null,"price":20.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/2695.jpg?v=1776303342"},{"product_id":"腦癌孤兒-韋紅疊","title":"I would love to go to school - Xiao Lui","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/0gxQRdAskQU\" title=\"腦癌男孩：「我很想上學！」\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003cdiv class=\"widget xhec\"\u003e\n\u003ch4\u003eXiao Lui, a strong boy who has a tragic fate. His father has died due to brain tumors, only 21 years old when he died. Two years later, Lui became helpless due to her mother remarried. Since then, he raised by grandparents. Unfortunate, His grandfather died of gastric cancer, leaving him with grandmother.\u003cbr\u003e\u003cbr\u003eHis grandmother also suffered from cancer. The disease has robbed her of virtually all movements, she do not have the ability to take look after Xiao Lui anymore. It was frustrated that his grandmother died of cancer after two months.\u003cbr\u003e\u003cbr\u003eThe blow happened again and again, Xiao Lui suffered from cancer when he was 13 years old. The tragedy was started from one day when he experienced a servere headache. After a number of detailed diagnosis which conducted by brain specialists, he suffers from Medulloblastoma. The surgery was extremely high risk due to the tumor close to brainstem. After the surgery, he has been momentary blindness. Also, the problems with language and movement appeared too.\u003cbr\u003e\u003cbr\u003eA series of chemotherapy and radiotherapy cause a damage to his immunity, and followed by some painful treatment such as lumbar puncture.\u003cbr\u003e\u003cbr\u003eHard as always, but he never give up. He just finished the last chemotherapy, and after the observation, doctors approve his discharge.\u003cbr\u003e\u003cbr\u003e‘I would love to go school.’ Said by Xiao Lui. It is just a humble wish, but may be only for us.\u003cbr\u003e\u003cbr\u003eThere is still a long time for recovery, he needs your help and donation. Give a hand, make a difference.\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eThe Silver Lining Foundation\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePhone: (852) 3488-4395\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eFax: (852) 3016-8685\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003eEmail:\u0026nbsp;\u003c\/span\u003e\u003ca href=\"mailto:info@slining.org\"\u003einfo@slining.org\u003c\/a\u003e\u003cbr\u003e\u003c\/h3\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"Xiao Lui","offer_id":43296311214198,"sku":null,"price":13.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/236.jpg?v=1776304057"},{"product_id":"纖維瘤全身蔓延-煙霧病心漏少女恐癱瘓-鄺凱祺","title":"Girl with Moyamoya Disease - Kwong Hoi Kei","description":"\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-01.jpg?v=1778826104\"\u003e\u003c\/p\u003e\n\u003ch4\u003eWhen the \"Lifewire\" team arrived at 21-year-old Kwong Hoi Kei ’s home, her mother was busy in the kitchen brewing Chinese herbal medicine while simultaneously putting away homemade stretching tools hanging from the ceiling. Beside her, Hoi Kei was picking at a hamburger for lunch; before long, she said she was full, unable to even finish the crispy fries.\u003c\/h4\u003e\n\u003ch4\u003eThe illness has stripped Hoi Kei of her appetite—she can barely finish a single bowl of rice a day. Coupled with poor absorption, she has become emaciated, appearing as little more than \"skin and bones.\" \"A few years ago, her weight managed to reach 36 kg, but it has been slowly dropping again over the last two years,\" her mother said anxiously. She tries every possible way to stimulate her daughter’s appetite: \"She likes fried chicken and savory, flavorful foods. I can't replicate that at home, but I try my best to accommodate her by slow-cooking and braising dishes until they are very tender, which she prefers.\" Her only hope is for her daughter to gain weight and build muscle mass.\u003cbr\u003e\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eCafé-au-lait spots appearing all over the body\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eShortly after Hoi Kei was born, numerous café-au-lait spots began to appear on her body. After multiple referrals and examinations, she was diagnosed with the rare disease Neurofibromatosis Type 1 (NF1). At the time, doctors noted that many patients experience only mild symptoms, such as skin pigmentation or small benign neurofibromas that do not interfere with daily life. Consequently, her family did not think much of it at the time.\u003c\/h4\u003e\n\u003ch4\u003eHowever, these Café-au-lait spots made her a target for school bullying; during her primary school years, she was ostracized by classmates and mocked with unkind nicknames. In 2017, at the age of 12, Kai-ki was admitted to her preferred Band 1 secondary school. This move allowed her to escape the bullying and make a circle of close friends, a period she describes as the happiest time of her life.\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-02.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-03.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eCerebral Hemorrhage and Stroke Caused by Moyamoya Disease\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHowever, this period of happiness was short-lived. About six months into the school year, while having afternoon tea with classmates after school, she suddenly began vomiting uncontrollably. Her panicked friends rushed her back to school for help, shortly after which she fell into a coma.\u003c\/h4\u003e\n\u003ch4\u003eEmergency hospitalization revealed that she was suffering from a rare cerebrovascular condition known as Moyamoya disease. In this condition, the narrowing and blockage of major arteries in the brain result in insufficient blood supply, triggering the growth of a network of tiny, fragile vessels to compensate. These vessels appear like a \"puff of smoke\" on an angiogram, giving the disease its name. Unfortunately, these delicate vessels are unable to withstand adult blood pressure; they eventually ruptured, causing Hoi Kei to suffer a hemorrhagic stroke.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eIt was the doctors who gave her back her life\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\"I gave her life for the first 12 years; after that, it was the doctors who gave her life back to her,\" her mother said. During her six-month hospitalization, Hoi Kei underwent multiple brain surgeries, including the installation of an intracranial shunt to drain excess fluid (hydrocephalus). She also battled infective endocarditis and was diagnosed with a septal defect (hole in the heart). Time and again, doctors managed to pull her back from the brink of death.\u003c\/h4\u003e\n\u003ch4\u003eThroughout those months, Hoi Kei had been delirious, struggling to pull out her life-support tubes and failing to recognize her own family. The very first words she spoke upon regaining consciousness were, \"Mommy, I’m sorry.\"\u003c\/h4\u003e\n\u003ch4\u003eChoking back tears, Mrs. Kwong recalled, \"That was the first time in over five months she had spoken to me with a clear mind. I had prepared myself for the possibility that she might never remember us again, so at that moment, I felt an immense sense of relief.\" As she wiped away her tears, Hoi Kei , who had been joking around moments ago, fell silent and gently handed her mother a tissue.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eMultiple Brain Surgeries: Memory Loss and Impaired Vision\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHoi Kei recalls, \"I have no memory of the incident whatsoever. I had no idea what happened; it felt like waking up from a long sleep only to realize, 'Oh, so I have this condition.'\" Her mother added, \"When she was first discharged, she could only remember things that had just happened; an hour or two later, the memory would be completely gone.\"\u003c\/h4\u003e\n\u003ch4\u003eThe stroke severely impaired Hoi Kei’s memory and damaged her vision, narrowing her field of view to just one-third of its normal range and causing strabismus (crossed eyes). She had to relearn how to walk and eat, all while living under the constant threat of another brain hemorrhage.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eFriends Become Strangers: Physical Decline and Wheelchair Dependency\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eReturning to school after a six-month hiatus, Hoi Kei found her once-close friends had grown distant. \"I’m not sure if they were afraid of hurting me, or if we just grew apart while I was in the hospital, but we could never go back to the way we used to play together,\" she remarked.\u003c\/h4\u003e\n\u003ch4\u003e\"Her poor memory added to it,\" her mother noted. \"People found it strange—they’d just told her something, but a moment later, she’d act as if the conversation never happened.\"\u003c\/h4\u003e\n\u003ch4\u003eAfter repeating Secondary 1, Hoi Kei realized her physical strength and memory couldn't keep up with the curriculum, so she transferred to a school for the physically disabled. She described the new school as incredibly supportive, and she even made new friends, but a greater challenge was lurking ahead.\u003c\/h4\u003e\n\u003ch4\u003eWith her parents accompanying her daily for practice, Hoi Kei had once recovered the ability to walk normally. However, about two years later, her gait began to deteriorate again. She walked with an unsteady, swaying motion, constantly stumbling. \"I would bump into everything. Walking from the front door to the balcony, I’d hit the fridge, then the table—just bumping into everything,\" she recalled. Covered in bruises and falling frequently, she initially used a cane, but her condition eventually regressed to the point where she became wheelchair-dependent.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-04.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-05.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eRegrowth of Neurofibromas: Impacting Vital Organs\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDoctors discovered that the neurofibromas have caused skeletal lesions in Hoi Kei’s body; her spinal and cervical regions have narrowed, compressing the nerves. This, combined with the fibromas located on her spine, has severely compromised her ability to walk. \"Right now, the tumors are most concentrated in her brain and spine—they grow in clusters, like strings of beads,\" her mother explained.\u003c\/h4\u003e\n\u003ch4\u003eThe proliferating fibromas are impacting various organs, including her lung function. Together with the effects of her septal defect (hole in the heart), she suffers from chronic oxygen deficiency and shortness of breath. Even while sitting and speaking, she struggles to breathe. Furthermore, her nerves are either racked with pain due to compression or have been severely damaged, causing surrounding areas to lose function and leading to a continuous decline in her physical condition.\u003c\/h4\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ctable width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-07.jpg?v=1778826104\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd\u003e\n\u003ch3\u003e\u003cimg alt=\"\"\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eHer hands are no longer capable of operating an electric wheelchair.\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eSeeing that Hoi Kei would grow exhausted and short of breath after walking for just two or three minutes—with her heart rate soaring to 160 beats per minute—her family purchased an electric wheelchair two years ago, hoping she could regain some independence and expand her social circle. However, they soon discovered she lacked the coordination to operate it.\u003c\/h4\u003e\n\u003ch4\u003eOver the past year, the weakness in her hands has intensified; she can no longer even tie her shoelaces. \"I used to help set the table for dinner,\" Hoi Kei recalled, \"but now, I’ll drop a chopstick halfway through, and I can't hold a cup or a bowl steadily.\" Even washing her hair now requires her mother's assistance.\u003c\/h4\u003e\n\u003ch4\u003e\"She’ll be drinking from a water bottle, and it will just slip and fall to the floor; she’ll be brushing her teeth, and the toothbrush drops,\" her mother added. Hoi Kei is unable to fully extend or straighten her fingers. Moreover, because of the profound weakness in her legs, she \"collapses\" into her seat whenever she tries to sit down. Her mother fears that if her condition continues to deteriorate, she will become completely unable to care for herself.\u003cbr\u003e\u003c\/h4\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003c\/span\u003e\u003cbr\u003e\u003c\/h3\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eHigh-Risk Spinal Surgery: A Choice Under the Threat of Paralysis\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eDoctors are planning surgery to straighten Hoi Kei’s cervical spine, but the risks are astronomical. Her mother said anxiously, \"The doctor said she is so frail that the surgery is massive—she could lose all her blood before the procedure is even finished.\" Furthermore, it is uncertain whether the surgery will improve her mobility. \"But if she doesn't do it, she faces total paralysis and failing heart and lung functions.\"\u003c\/h4\u003e\n\u003ch4\u003eNeurosurgeons also plan to perform a cerebral revascularization (bypass) surgery to improve blood flow and reduce the risk of further hemorrhaging. Facing multiple major operations, Hoi Kei, who has no memory of her previous stroke surgery, remarked with a smile, \"Since I lost my memories of 2017, I don't know how terrifying surgery can be, so I’m relatively less worried.\"\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-06.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-08.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eConstant Nausea and Crushing Headaches\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHowever, a lingering sequel from the stroke—constant headaches—haunts her daily. \"I get headaches and feel nauseous very easily, which ruins my appetite. The pain feels like something is crushing my head.\" Throughout the hours spent with the \"Lifewire\" team, her head throbbed persistently. \"I've grown used to this kind of pain. Sometimes it's so severe that there's nothing I can do but stop eating.\" At least once or twice a week, she suffers from intense episodes lasting several hours, often vomiting after eating and requiring painkillers and rest.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eLosing Life’s Greatest Treasure: Friendship\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eWhen asked what the disease has stolen from her that she treasures most, Hoi Kei answered without hesitation: \"Friends.\" To this day, her Facebook profile picture remains a group photo with her Secondary 1 classmates, a testament to how much she misses those days. She has also lost her freedom of movement and her academic pride. \"I used to be a good student, ranked in the upper-middle tier. Now my grades are poor, which has been a huge blow to me.\"\u003c\/h4\u003e\n\u003ch4\u003eAspiring to be a social worker, she is currently enrolled in a related course at IVE. \"But I might have to transfer majors because I can't keep up with the curriculum.\" She tires much more easily than her peers, requiring more rest while balancing a relentless schedule of follow-up appointments in orthopedics, neurosurgery, cardiology, oncology, and ophthalmology. Unable to meet assignment deadlines and fearing the physical demands of future internships, she is considering switching to a Digital Business program, hoping to pursue her original dream once her health improves.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-09.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-10.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003ePicking at Scabs: Using Physical Pain as a Vent\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eWhen faced with frustration and sadness, Hoi Kei tends to bury her emotions deep inside. \"I like to pick at the scabs on my wounds as a way to vent. There’s a sense of release in that moment—being able to actually feel the pain. But I don't recommend this method; please don't follow my example.\" As she spoke with a smile, the wounds on her elbows and calves were once again raw and bleeding from being repeatedly picked at.\u003c\/h4\u003e\n\u003ch3\u003e\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eProhibitive Medical Costs: Over $70,000 a Month\u003cbr\u003e\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eRecently, a drug designed to inhibit the growth of neurofibromas passed drug review in Hong Kong. However, because Hoi Kei is over 18, she is ineligible for government subsidies and must pay out of pocket. The medication costs $1,000 per pill; at her current dosage of two pills a day, this alone costs over $60,000 a month.\u003c\/h4\u003e\n\u003ch4\u003eIn addition to the high cost of medication, Hoi Kei requires nutritional supplements, physical therapy, occupational therapy, and hydrotherapy, as well as Chinese medicine treatments like acupuncture and Tui Na (massage therapy). Although these treatments have shown significant benefits in improving her memory and physical functions—effectively slowing her deterioration—and the family wishes to increase her sessions, the current total cost already exceeds $10,000 per month, making it an unbearable financial burden. Furthermore, asHoi Kei’s limited mobility requires her parents and older sister to take turns staying home to care for her, the family income has plummeted, leaving them in a state of financial deficit.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-11.jpg?v=1778826103\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-12.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eRehabilitation Tools: Handcrafted by Her Father\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eTo enable Hoi Kei to continue her rehabilitation exercises at home, her father custom-built various tools, such as hanging ropes from the ceiling for her to pull and strengthen her arms. Her older sister also plays Switch games with her as a form of light exercise. Furthermore, the entire family frequently accompanies her to activities organized by \"Lifewire,\" hoping to broaden Hoi Kei's social circle and bring more joy into her life.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-13.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-14.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\"The span of life lies within your hands.\"\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eHoi Kei still occasionally bickers back and forth with her mother. Witnessing her own gradual decline from a healthy young girl, the two of them said in unison, \"Our mindset is that since we lack the power to change the situation, our only choice is to accept and face it.\" Her mother shared her aspirations: \"I hope she can regain her self-care abilities; I hope she can be healthier and happier, and that her condition won't get any worse. No matter what, we must look forward. The length of your life is in your hands—you must keep fighting for yourself.\"\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-15.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-16.jpg?v=1778826104\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e神經纖維瘤第1型（Neurofibromatosis type1;NF1）\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eNeurofibromas are composed of an intertwined network of nerve and fibrous cells. Most grow along the peripheral nerves and are situated on the surface of or beneath the skin, potentially appearing on any part of the body. Some massive tumors, or those growing in the neck and thoracic cavity, may compress the trachea and lead to asphyxiation, or press against the spinal nerves, resulting in paralysis or death.\u003cbr\u003e\u003cbr\u003ePrevalence: 1\/2,500 – 1\/3,000\u003cbr\u003e\u003cbr\u003eMain Symptoms and Impacts:\u003cbr\u003e\u003cbr\u003e.Flat, light-brown spots on the skin (café-au-lait spots)\u003c\/h4\u003e\n\u003ch4\u003e.Freckling in the armpits and groin area\u003c\/h4\u003e\n\u003ch4\u003e.Tiny bumps on the iris of the eye (Lisch nodules)\u003c\/h4\u003e\n\u003ch4\u003e.Optic gliomas, which may cause vision loss or even blindness\u003c\/h4\u003e\n\u003ch4\u003e.Soft, pea-sized bumps on or under the skin\u003c\/h4\u003e\n\u003ch4\u003e.Head size larger than normal (macrocephaly)\u003c\/h4\u003e\n\u003ch4\u003e.Learning disabilities\u003c\/h4\u003e\n\u003ch4\u003e.Seizures\u003c\/h4\u003e\n\u003ch4\u003e.Hypertension (high blood pressure)\u003c\/h4\u003e\n\u003ch4\u003e.Short stature\u003c\/h4\u003e\n\u003ch4\u003e.Skeletal abnormalities, such as scoliosis\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003e\u003cspan class=\"font-s\"\u003e採訪、撰文：劉嘉欣、陳偉麒、梁劍紅\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"font-s\"\u003e編審：梁劍紅、陳偉麒\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"font-s\"\u003e攝影：Sea.Pho.Yea、鄧欣\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"font-s\"\u003e影片製作：Lifewire、鄧欣、Sea.Pho.Yea\u003c\/span\u003e\u003cbr\u003e\u003cspan class=\"font-s\"\u003e採訪日期：2025\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cspan class=\"font-s\"\u003e—————————————————————————————————————————————————————\u003c\/span\u003e\u003c\/p\u003e\n\u003cp\u003e\u003cspan\u003eMay 2026 Update\u003c\/span\u003e\u003c\/p\u003e\n\u003cp\u003e\u003cspan class=\"font-s\"\u003e\u003cspan\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_5c3ac90c-9a8c-4d55-909b-6fabbdb4ea74.jpg?v=1780457700\" alt=\"\" style=\"display: block; margin-left: auto; margin-right: auto;\"\u003e\u003c\/span\u003e\u003c\/span\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eKwong Hoi Kei triumphs after a high-risk surgery of over 15 hours!\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eHoi Kei, who relies on a wheelchair due to Neurofibromatosis Type 1, congenital heart disease, and Moyamoya disease... Faced a deteriorating condition as bone lesions and neurofibromas growing along her nerves narrowed her cervical spine.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eIn mid-April, Hoi Kei underwent two ultra-high-risk, life-threatening surgeries: The Neurosurgery team removed tumors at the C1 and C2 levels of the cervical spine. The Orthopedic team performed spinal correction from the C3 cervical spine to the T8 thoracic spine.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThe surgery lasted from 8:00 AM until 11:00 PM that night. With 9 units of blood transfused during the process, the surgery was successfully completed.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eAfter the operation, Hoi Kei, who has a history of brain hemorrhage and stroke, remained in the ICU and was fed via a nasogastric tube. She mentioned that her right hand is now more flexible than before, but her left hand is weaker and cannot be lifted. Her head and body feel stiff like a board and cannot move for now; she needs some time to rest and recover.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eThanks to everyone’s donations and care, we hope for Hoi Kei’s speedy recovery. With every bit of extra protection for their lives, these children gain the chance to pursue their dreams.\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cimg style=\"display: block; margin-left: auto; margin-right: auto;\" alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_08d38f25-1a2f-499d-97dc-1a6390d5dbbe.jpg?v=1780457699\"\u003e\u003c\/p\u003e","brand":"Lifewire HK","offers":[{"title":"Kwong Hoi Kei","offer_id":43393567195254,"sku":null,"price":220.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3633-00_e06052fb-5b33-4bee-bed1-6cde4b94c2fd.png?v=1778825899"},{"product_id":"黏多醣症男孩-朱逸朗-副本","title":"黏多醣症男孩 - 朱逸朗","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/4VUsAfl0oB8\" title=\"【#透視罕見病】骨骼變形 器官受損 黏多醣症男孩：「我不放棄！」\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e9歲的年紀，6歲的個子；\u003cbr\u003e嘗過生死一線，管他「大部份得20歲命……」之說；\u003cbr\u003e他總是昂首鏗鏘說出：「我叫朱逸朗，我患上黏多醣貯積症，第六型。」\u003cbr\u003e「我係無畏無懼嘅！」\u003c\/h4\u003e\n\u003ch4\u003e「肯積極面對人生，總會搵到前路?！」每次跟朗朗見面，總期待着其金句。帶點老積而肯定的語氣，出自這罕見病小朋友口中，逗得人開懷、亦教人憐惜。\u003c\/h4\u003e\n\u003ch4\u003e愛唱歌、跳舞、播音…，興趣多多的朗朗，外型較同齡孩子矮小。因為體內缺乏了某種酵素，令黏多醣累積，影響細胞和關節，造成身形短少及關節僵硬，以致朗朗脊髓凸起有點內彎，需要戴腰封來令腰脊挺直；手指同樣短小內彎，難以發力。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-01.jpg?v=1774423471\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e「大部份係得20歲命」\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「比六合彩仲難中嘅，都中咗！」朗朗9個月大時，體檢發現他未能像其他嬰孩般坐穩，發展落後於正常嬰孩，骨科初部診斷指他腰椎及胸部骨骼變形，有數節脊髓較短小，且背部多胎痣，經反覆查驗，終確診黏多醣症6型，發病率約二十一萬分之一。\u003c\/h4\u003e\n\u003ch4\u003e兒子患上惡疾，還要多來致命一句「大部份係得20歲命」，兩夫婦除「日日攬住喊」，大叫「接受唔到！」還可以怎樣？！堅強的孩子，原來遺傳自父母的強大基因，爸媽哭過怨過，堅決勇敢擺脫罕病的陰霾，「我們做父母都唔積極面對，朗朗又點積極面對佢嘅人生呢？」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-02.jpg?v=1774423471\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e我們能選擇的  是態度\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e面對夭心夭肺的病情提問，爸爸從不迴避，「我們選擇樂觀面對，一直坦誠同朗朗講病情，未來會面對嘅問題等，等佢清楚自己狀況。」朗朗在旁默默聽着，邊點頭、邊自信地說：「積極面對總會有好結果。」\u003c\/h4\u003e\n\u003ch4\u003e精靈的朗朗，樂天而懂性，不時說出窩心話句，在旁的無所不受感染。小編每次跟他見面，總愛拖着他那小小的雙手。他手腳不夠靈活，拿刀切水果有點吃力，水樽蓋也需爸爸幫忙扭開，爸爸說：「日常生活不算大問題，不過他身形短少，頭重腳輕，要小心避免跌倒，同時需要多做運動，令骨骼強化，所以趁假日會帶他到公園走動。」\u003c\/h4\u003e\n\u003ch4\u003e勇於嘗試的朗朗，即席展示「冇嘢難到我」精神，跟爸爸一起切水果、摺衣服做家務，這新丁處理得井井有條，「其實我從來未做過呢啲。」大口大口唊着「處女作」，份外滋味；還神氣的捧着請Lifewire團隊吃。\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-03.jpg?v=1774423471\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e有藥醫卻醫不得？！\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e爸爸積極了解兒子這罕見病，不惜走訪台灣和美國的黏多醣症相關協會，了解外國的治療方法，發現絶望還未到盡頭。治療朗朗的方法有兩個，一是用貴藥，為身體提供所需的人工合成酵素，但醫藥費每年最少百多萬元；二是做手術，進行臍帶血移植，但風險極高。\u003c\/h4\u003e\n\u003ch4\u003e「因為及早用藥治療，外國有病人已二十多歲了，身形與一般健康人士無大差異，還成為了醫生，可見及時用藥，可改寫病童的一生。」爸爸無奈說：「隻藥太貴，一般家庭點負擔？！但香港政府亦冇任何資助！」有藥用不得！何等的諷刺！「隻藥要經過醫管局專家小組評估，睇吓患者係咪值得用藥，據知有不成文規定，小朋友5歲先可用。」\u003c\/h4\u003e\n\u003ch4\u003e可是，黏多醣症囤積體內時間越長，治療越困難。延遲治療，會令骨骼變形，甚至令肝臟腎臟受損，變得脹大，「若多等幾年才醫治，身體已受到很大傷害，用藥也難以復原，對孩子造成很大影響。」\u003c\/h4\u003e\n\u003ch3\u003e\n\u003cbr\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e沒選擇下的 ——「選擇」\u003c\/span\u003e\n\u003c\/h3\u003e\n\u003ch4\u003e「好似有選擇，但其實我哋係硬着頭皮行呢條路。」礙於香港的醫療制度，爸爸艱難地「選擇」了唯一出路——為當時還不足一歲的朗朗進行臍帶血移植手術，盼阻止兒子身體再惡化。\u003c\/h4\u003e\n\u003ch4\u003e可惜禍不單行，朗朗於手術後感染病毒，致淋巴脹大壓得氣管難以呼吸，更出現嚴重水腫，需服用治療淋巴癌的藥物抗病。爸爸不惜停工4個月，全力照顧徘徊鬼門關的朗朗。\u003c\/h4\u003e\n\u003ch4\u003e回憶過去，硬朗樂天的爸爸泛起淚光，卻沒怨天尤人，「其實香港嘅醫生都盡能力幫我哋，只係制度上僵化，令小朋友不能及早醫，承受高風險同痛苦。」\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-04.jpg?v=1774423471\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e喜到盡頭   仍要咬着牙關\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e手術後朗朗情況的確好轉，一家人一心以為可延長壽命，改寫朗朗一生，誰知......「醫生評估話，十幾年後，朗朗有機會自行排斥移殖而來嘅物質，眼睛、骨骼、心臟等各方面有機會轉差，回復到手術前嘅狀況。」\u003c\/h4\u003e\n\u003ch4\u003e如果可選擇，誰願下輸不起的注碼？朱爸爸無悔選擇做手術，拒絶乾等。朗朗年紀少少，彷彿看得更透徹，總能將辛苦不安輕描淡寫地帶過，或慧黠地給大人一句當頭棒喝，問朗朗身體會不會痛？「每個人都會遇到難事，總會揾到前路......爹哋媽咪抱我時，會俾我力量，係一種叫做愛嘅力量！」\u003c\/h4\u003e\n\u003ch4\u003e「撳邊個掣？我想影呀！...」畢竟只是九歲的孩子，沉重的話題還未完結，朗朗看到攝影機又忍不住「導演上身」：「Action！Cut！放飯！」還好奇地拿攝錄機拍攝爸爸及自拍。\u003c\/h4\u003e\n\u003ch4\u003e他的樂天豁達，支撐着父母跨過每度難關，「為我們減輕了很多壓力。」對兒子的未來，朱爸爸的期望很簡單，「希望如我給他的名字一樣，安逸平穩地、開朗地過生活，不用承受太多的痛苦，可以正常地成長，照顧到自己。」\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-05.jpg?v=1774423471\"\u003e\n\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e跑沙漠的準備\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e訪問當天，朱逸朗距離出發到戈壁沙漠還有六天，他在Lifewire安排下，成為其中一位坐在單輪椅車上，由極地同行的哥哥姐姐跑手推着跑戈壁的病童之一。經過連月訓練，朗朗已掌握心得，「部車容易向前向後傾，跑手很容易跌倒，所以大家只能慢慢跑，多加訓練。」路面不平時坐在車上會感到顛簸，但他坦言「唔擔心辛苦」，更希望透過這次活動，可以給其他患罕見病小朋友打氣：「我哋一齊面對啦，好唔好？」\u003c\/h4\u003e\n\u003ch4\u003e他一歲時確診黏多醣症6型，發病率只有二十一萬分之一，\u003cbr\u003e以為幸運是，有藥有手術可治療，\u003cbr\u003e結果是，有藥醫不得；\u003cbr\u003e手術成效亦不似預期，\u003cbr\u003e但他一家人相信：積極面對總會有好結果！\u003cbr\u003e\n\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-06.jpg?v=1774423471\" alt=\"\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e認識罕見病：什麼是黏多醣症？\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e患者缺乏了分解黏多醣的酵素，這酵素像清潔工人，負責清除身體上過多的黏多醣。但黏多醣症患者體內卻缺乏了這種重要酵素，令黏多醣不斷囤積，影響細胞正常運作，導致心臟、骨骼、關節、呼吸道系統、神經系統等受到破壞。患者若沒適當的治療，細胞日漸破壞器官，隨着年紀增長而越加惡化，一般只能活到二十多歲。\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"朱逸朗","offer_id":43434358177910,"sku":null,"price":250.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/3606-00.jpg?v=1774422688"},{"product_id":"他們-徘徊死亡邊緣","title":"They once hovered on the edge of death - Newborn Babies","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/vR37B8VG2lM?si=ILjqiJzPcSBuMqF-\" title=\"他們....曾徘徊死亡邊緣\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eThe first 28 days of life, the neonatal period, are the most dangerous. Nearly half of all deaths of children happen within these first days of life. Most of these babies die from routine conditions such as a lack of oxygen (asphyxia), low birth weight, or infection – deaths that are often preventable when good neonatal care is available.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06-1_54efcde9-941f-40dc-b66f-29fdad80c54e.png?v=1780365476\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_778cdd17-23ed-4b9b-9c02-b32a32ca96e5.jpg?v=1780365473\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eIn 2013, over 140,000 newborns died in China. Babies born to poor, rural families face the worst odds. Their families may not be able to make a long trip by bus or motorcycle to the nearest suitable hospital, the local health care provider may not have adequate training or equipment to address anything but a routine birth, or, the family is simply unable to afford life-saving care.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07-1_087d30a5-f93f-4d0c-8a39-65d670b07c1e.png?v=1780365476\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_a600e497-a0a7-41c6-9571-16eb07d436da.png?v=1780365473\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eYour generous support will help Children’s Medical Foundation bring that life-saving care to China’s youngest and poorest by training doctors and nurses in crucial neonatal skills, donating specialized medical equipment, and providing funding to families who cannot afford medical treatment.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_1945ed85-d0cd-4239-900c-ec25109d815a.jpg?v=1780365472\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_9f8a4bff-bc1c-41b6-9ebc-090029f54249.jpg?v=1780365472\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eChildren’s Medical Foundation was founded in 1995, we innovate ways to improve healthcare and access for underserved populations. Past projects include establishing Shanghai Children’s Medical Center (one of China’s top pediatric hospitals) and funding surgeries for children with congenital diseases. Currently, we focus on neonatal care at 26 sites across 12 provinces in China, giving more and more babies a better chance at life.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_56e329c7-7cdf-47cf-b254-a78d5c70d8ee.jpg?v=1780365473\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_b46f6a77-6ba9-4b37-9c0b-05cdeb6c8192.png?v=1780365473\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eChildren's Medical Foundation Limited\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eThe Children's Medical and Health Foundation was established in 1996 and at that time became part of Project Hope Hong Kong (Project Hope, a U.S. charitable organization, a non-profit international health education foundation). Since 2006, the Children's Medical and Health Foundation has become an independent, autonomous, and self-sustaining charitable social service organization, allowing the foundation to continue focusing on Asia and allocating resources to Asia. The foundation's board of directors fully supports the foundation's operations through full donations, with the directors' contributions covering all management expenses of the Children's Medical and Health Foundation.\u003cbr\u003e\u0026nbsp;\u003cbr\u003e\u003cspan\u003ePhone\u003c\/span\u003e：(852) 2877 4118\u003cbr\u003e\u003cspan\u003eFax\u003c\/span\u003e：(852) 2525 0511\u003cbr\u003e\u003cspan\u003eEmail\u003c\/span\u003e：info@cmf.org.hk\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"初生嬰兒","offer_id":43467304566902,"sku":null,"price":10.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_662f3e85-bb75-48dc-a059-5b65f8d0bbc0.jpg?v=1780367960"},{"product_id":"玻璃骨女孩的真實自白","title":"Osteogenesis Imperfecta Girl - Tian Tian","description":"\u003cp\u003e\u003ciframe title=\"【#透視罕見病】玻璃骨女孩的真實自白……\" src=\"https:\/\/www.youtube.com\/embed\/SaFs1Sw0olw?si=icRYiZ84uZu2GNT8\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eThis is a story of confession from a 12-year-old girl, an Osteogenesis Imperfecta patient.\u003c\/h4\u003e\n\u003ch4\u003e\"The bones on my spine grow outward, even a short while of sitting hurts. I need assistance for even getting dressed,\" said the delicate Sweetie. Physically vulnerable like a grade 3 student, Sweetie revealed to us the enormous pain she had been through with the torture of the disease. Teenage is the most exciting period where young girls head out for adventures. However, for Sweetie, a one-minute run is exhausting enough to choke her breathe.\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_81a303d6-106b-4998-92ce-e19dec85c211.jpg?v=1780368724\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_f794f332-ef8c-4618-8f9d-f92527916c0f.jpg?v=1780368724\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003eIt is not a suffering anyone can imagine\u003c\/h3\u003e\n\u003ch4\u003eNot only did she lost the ability to exercise normally, she had to undergo pains that normal people do not experience throughout their lives. She was a patient for Osteogenesis Imperfecta type V. (a.k.a brittle bone disease or scoliosis). Similar to many other patients suffering from the disease, Sweetie was found having symptoms of OI when she was only 2 to 3 years old, the time when she just learned to crawl and walk around.\u003c\/h4\u003e\n\u003ch4\u003eSweetie has been suffering from the physical pain and limitations brought about by OI throughout the years. \"My bones do not grow in the right position, that's why my arm does not bend much, and it is a bit distorted too. My left arm as well. I did had surgery when I was small but it did not help,\" said Sweetie as she rolled up her sleeves showing us her unbelievably bony and disproportionately small arms.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eKeep smiling in times of suffering\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eHer story might sound like a complete tragedy, Sweetie, however, has never put away the smile on her face. \"You know what? The bone on my back is back to its right position!\" Sweetie, in her wheelchair, exclaimed excitedly. Next to Sweetie was her mom, feeling complex like the writer did in face of Sweetie 's optimism.\u003c\/h4\u003e\n\u003ch4\u003eA few months ago, Sweetie received a medical donation of over $300,000 from the Society for the Relief of Disabled Children for an instrumental posterior spinal fusion surgery performed at the Duchess of Kent Children Hospital at Sanday Bay in Hong Kong. The three-week long halo cranial tractor pre-surgical treatment was a total nightmare. Sweetie 's head was tied tightly to the metallic hair-band like machine, with her body affixed to the supporting frame, stretching her body continuously. Nonetheless, such pain was incomparable to the sufferings she had been through all the years.\u003c\/h4\u003e\n\u003cp\u003e\u003cimg src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_59d53287-dc20-4176-bff2-c29e845d318c.jpg?v=1780368724\" alt=\"\"\u003e\u003c\/p\u003e\n\u003ch3\u003e\"I can now look at my mom without raising my head!\"\u003c\/h3\u003e\n\u003ch4\u003e\"I am 6.5cm taller than before!\", Sweetie told us her good news with a big smile, showing a sign of relief. Sweetie had been suffering from abnormal bone growth, resulting in a tiny body. However, after the surgery, Sweetie 's back no longer bends, but stretching longer instead. \"The best thing is that, I can now look at my mom without raising my head!\", exclaimed Sweetie.\u003c\/h4\u003e\n\u003ch4\u003eSweetie never forgets to be thankful and optimistic even at times of all these sufferings. \"I am grateful to the Society for the Relief of Disabled Children for helping me all along. Staffs at the hospital have been giving me encouragements\", Sweetie understood that there are many other unfortunate children suffering from the pain of the disease, yet waiting for a chance to receive surgery like she did. Now She has only one humble wish, that is to have more people helping the other patients.\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eGive a hand, make a difference\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003eWant to make Sweetie's wish come true by supporting other children suffering from the disease? Click \"donate\" on Lifewire.hk, leave a message of encouragement, share on social media platforms such as Facebook, Instagram etc., and ask your friends to like, share and donate together. Or you can initiate charity events like ice bucket challenge, charity marathon, fundraising cycling or other innovative charity activities to help sick children get their treatment as soon as possible.\u003cbr\u003e\u003c\/h4\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e《Lifewire Knowledge》\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eOsteogenesis imperfecta (OI) is an inherited disease causing insufficient collagen in patient, resulting in brittle bones. The patients' bone might be as fragile as glass, some might get bone fractures simply by coughing or rolling over their bodies. OI patients need full attention and care from their families. Donate to support China Patients Project by the Society for the Relief of Disabled Children.\u003cbr\u003e\u003cbr\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003ch4\u003eThe Society for the Relief of Disabled Children (SRDC)\u003cbr\u003ePhone: (852) 2819 3050\u003cbr\u003eFax: (852) 2817 0322\u003cbr\u003eEmail: info@srdc.org.hk\u003c\/h4\u003e","brand":"Lifewire HK","offers":[{"title":"恬恬","offer_id":43467336712310,"sku":null,"price":11.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_18695faa-07ca-4ee2-95a1-c9775fb416b5.jpg?v=1780368677"},{"product_id":"下肢變形少女-努力走下去","title":"A patient of osteofibrous dysplasia - Youtao","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/GJ_TF2dCQGs?si=EhgbIMgwpFgjlNDt\" title=\"【#透視罕見病】下肢變形少女 努力走下去\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eYoutao, a patient of osteofibrous dysplasia, a precursor of a more aggressive form of adamantinoma.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border-image: initial; height: 833px; border: medium none currentcolor;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 416px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 416px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/12_0d4f2ae1-7b8b-4c5b-b59c-1d0fae593bf4.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 417px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 417px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/13_fc6e594d-9511-4da6-b059-e0fc491e8f5c.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eShe suffered from the lower limb deformity since birth. She had a gradual correction of deformity surgery at the Duchess of Kent Children's Hospital at Sandy Bay to improve her walking ability on 13 December 2014.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/14_cb21d13d-936f-4aa8-a70c-e186b5ccd8f4.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/15_ce1f96b1-15cd-47e3-bb29-d203968a5c38.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eShe was discharged from hospital and currently with external fixator and undergoing post-op treatment. There are many similar cases which need your support to give children a better future.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/16_583ddddd-7730-49c6-87d1-551cddbe7bfb.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/18_982bace2-808c-43e5-a95a-814ef9b2b60d.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/17_3fd1b1c5-999d-439c-95fa-9fec3b1de648.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/19_33f97dc6-b4f1-4ce5-a997-b1933e0bef4c.jpg?v=1780371814\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eThe Society for the Relief of Disabled Children (SRDC)\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003ePhone: (852) 2819 3050\u003cbr\u003eFax: (852) 2817 0322\u003cbr\u003eEmail: info@srdc.org.hk\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e\n\u003cp\u003e——————————————————————————————————————————————————————\u003c\/p\u003e\n\u003ch2\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eUpdate：\u003c\/span\u003e\u003c\/h2\u003e\n\u003cp\u003e\u003ciframe title=\"别了，怪腿！少女终笑了\" src=\"https:\/\/www.youtube.com\/embed\/Y2GCsDSeH_E?si=_ARya_AXHJIwSygC\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e別了，怪腿！ 少女終笑了\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e哭過、痛過……曾經，自以為只與不幸掛鈎；\u003cbr\u003e自少患有骨纖維發育不良症，致小腿嚴重變形；\u003cbr\u003e年來，手術的失敗、生活的不便…19歲的有濤，臉上都被絕望所掩蓋；\u003cbr\u003e還記得，初次探訪有濤，正值手術前夕；\u003cbr\u003e「很痛苦！」一字一淚，一切都概括了。\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_9cb6cb6f-e2de-41e1-ba60-b2d72b0ce53f.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_b11d42fe-d106-40cf-a415-304bd772596d.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e曾經…遺忘了笑容\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e然而，事隔數月，經過腫瘤切除及肢體延長手術，世界彷彿不再一樣。\u003cbr\u003e眼前的有濤，昔日那憂心忡忡的無奈表情不復再，取而代之，是蓋掩不住的喜悅。\u003cbr\u003e「比以前好多了！很高興」「身體不用傾重一邊走路，可以走得更多……」\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_4e7bda7b-1a42-4c8c-994d-c9dd4c322a22.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_e0c4db13-a420-416a-a76b-176e5b100f2a.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e與支架…皮肉相連\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e看著這自在的笑容，難以想像這腿上，原來牢牢的與支架皮肉相連。\u003cbr\u003e儘管腫瘤雖已切除，但但小腿同時短小了，手術後的九個月，她仍需安裝支架，每天把骨骼延長及固定。\u003cbr\u003e主理有濤個䅁的大口環根德公爵夫人兒童醫院兒童骨科主任周宏顧問醫生指， 「她現時每天約延長骨骼1mm，全程共需延長約10cm；由於骨骼延長後有空隙，現還需時癒合；日後骨骼癒合了便與常人無異。」\u003c\/h4\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e腿上7個小肉洞\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e眼見有濤長期插著7枝粗壯支架，腿上露出7個小肉洞，旁觀如我們，也膽顫心驚。\u003cbr\u003e惟當事人卻堅定的說：「不痛！」因相比手術前，這根本微不足道。\u003cbr\u003e「可正正規規的走路，跟正常人一樣。」\u003cbr\u003e邊說邊笑的她，現在還每天熟練地自行清洗傷口。\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/09_2877066a-2aed-4525-9448-4a5ca63f9a04.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/10_6b5d5027-a559-4419-91d8-2eda868b2b6f.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e當中醫師 幫助他人\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e「上學!能夠考到中醫助理師資格當一名中醫師；因為我受了很多的痛苦，讓有病的人都能獲幫助!」\u003c\/h4\u003e\n\u003ch4\u003e「有濤，你要加油呀！」\u003c\/h4\u003e\n\u003ch4\u003e「值得高興的！有濤再現笑容，可當回正常人。看到她也給我們帶來很多的喜樂！」\u003cbr\u003e出過不少力捐助有濤的俊和發展集團人力資源部經理 Sanlies Lo，是次帶同同事Zeca Huan齊往鼓勵她。\u003cbr\u003e「於Lifewire《護.聯網》網頁，看到有濤的相片甚為震撼!部門即發揮團隊精神，發起4個籌募活動」\u003cbr\u003e她們送上笑口常開兼有大耳朵的小公仔，盼可聆聽有濤的心聲，還親手造了很多色彩的小盆栽。\u003cbr\u003e「這有如彩虹，代表有希望;而且有兩個像在笑的手掌，盼有濤的前路，也如這盆栽有希望有笑容!」\u003cbr\u003e「有濤，你要加油呀！」 簡單的一下拍肩，傳遞的不單是關心，還有寄予衷心的支持。\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_40aa5445-bac5-49d7-b3eb-c25d074c1453.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_2bbf5048-7139-427e-8e1f-ec627d280d52.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e謝謝Lifewire！謝謝大家！\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e最後，有濤只想跟大家說：「謝謝《護．聯網》Lifewire的幫助！謝謝大家！」\u003c\/h4\u003e\n\u003ch4\u003e莫以善小而不為\u003c\/h4\u003e\n\u003ch4\u003e別小覷自己的力量，改變病童一生，你也做到！\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07_9b9df5db-9ca0-48a8-a29e-ec144b001cb0.jpg?v=1780371815\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_74d405f6-1260-4c2e-8528-bcbd26e552fb.jpg?v=1780371814\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e","brand":"Lifewire HK","offers":[{"title":"有濤","offer_id":43467371184246,"sku":null,"price":12.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_66abb08d-a56e-49d4-ad45-1d703511b62b.jpg?v=1780371794"},{"product_id":"青光眼女孩-遇上黑暗","title":"Ending Blindness - Xiao Hui","description":"\u003cp\u003e\u003ciframe title=\"青光眼女孩 遇上黑暗\" src=\"https:\/\/www.youtube.com\/embed\/700KVr7RmlU?si=ME6hK04v0mgiaFU3\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eXiao Hui is a patient of Congenital Glaucoma, and this cause her vision blurred.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_b481e336-9880-40cf-8caf-e55a6438de6f.jpg?v=1780380367\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_8e432bf7-325b-4b80-974f-418dc4041808.png?v=1780380368\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eShe cannot see the screen and color clearly which is ten feet in front of her.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_b812b673-5c10-4b13-8b0e-472647ba616e.png?v=1780380566\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_f306894c-f012-4b3e-a6f9-4b0520ca86f8.png?v=1780380565\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eXiao Hui was hard to handle some daily actions due to the blurred vision. Even conducting homework, her eyes tickles since the workload is too much for it.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_0360e95b-a008-4612-b467-5f4bde5858bb.png?v=1780380566\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07_f83c6359-cc47-42cd-8cad-c25f61652a16.png?v=1780380565\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eBesides that, she was finished the surgery in Feb 2013 because of Scoliotic Deformity. Unfortunate, she still has to face another challenge.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_4d6d0302-36fe-437d-9bc6-bb779c736206.png?v=1780380566\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/09_b2cd3e77-b47a-4cdf-a572-5d208aaf8bc4.jpg?v=1780380564\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eAlthough she was living with her two brothers in an extremely poor condition, she never gives up. The dream of becoming a doctor may be too far her, but she try hard to accomplish.\u003c\/h4\u003e\n\u003ch4\u003eWe could not realize how hard her situation was, but she fights for herself in every day.Will give her a hand?\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/10_96b276a9-8dde-4fb1-bbbc-ddfd45c61962.jpg?v=1780380564\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/11_2003e5d5-137a-4345-872f-142b20e90810.jpg?v=1780380564\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eThe Society for the Relief of Disabled Children (SRDC)\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e\u003cspan\u003ePhone\u003c\/span\u003e：(852) 2819 3050\u003cbr\u003e\u003cspan\u003eFax\u003c\/span\u003e：(852) 2817 0322\u003cbr\u003e\u003cspan\u003eEmail\u003c\/span\u003e：info@srdc.org.hk\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"小慧","offer_id":43467635097718,"sku":null,"price":14.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_95987464-e677-499e-9de5-31917a35faca.png?v=1780380334"},{"product_id":"被遺忘-麻瘋病康復村","title":"Leprosy Rehabilitation Village","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/6V4wXQCgXkM?si=PGLC09qtXyp7yTyU\" title=\"被遺忘…痲瘋病康復村\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003eAbuluoha Village is a leprosy rehabilitation village, located in Xichang City Liangshan Prefecture town of Butuo drag black depend rural feel, compared to the remote location. Built in 1966, but until 2008 it was officially incorporated into the village administrative territory. Prior to this, many leprosy same village, where everything is not perceived by the outside world.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07_f546921e-223c-49c0-8852-fd61fd46aedb.jpg?v=1780384558\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/17_9ef40929-5524-4c16-9c8c-fa641beb2c7a.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eBut until now, although villagers have free access, but the village is still no way through, and out of need to go three to five hours mountain village Ebuluoha still closed; plus discrimination still exists, so they are still difficult with the outside world close.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/18_7f40b216-53b2-47bb-9046-cc75e55fa8d0.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/19_b228f394-a450-47f5-8e40-38496ca696bb.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eIn the 1950s and 1960s, due to infection caused by leprosy has been dubbed the physically disabled evil ghosts that people have distanced themselves from him. Fear caused by ignorance and misunderstanding of its contagious, so when the number of provinces also individually isolate the disposal of the lepers. In a closed leprosy village, the government will arrange and materials required for the most basic of life for them, and regularly send medicine.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_0c984331-b8dc-4a96-8de7-55875d3f60bf.jpg?v=1780384559\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_2f74207d-b6ce-4e93-915a-f46e94cd5c92.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eThey self-sufficiency in the village, married, living seems no different from the previous life. However, once they were placed in this, we will not be allowed to leave, many of the first generation of the villagers since they never return to their original homes, even before the death can not be with their families goodbye on the side.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_0237de6a-2ae5-4622-801b-778d88bf830f.jpg?v=1780384559\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/13_51a1bb99-2929-435a-8db7-6695fb28221c.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/20_5c2113b5-cc57-41e7-9469-3affb757a356.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/21_29e02939-a695-484f-8abc-7703824e9d35.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border-image: initial; height: 1762.2px; border: medium none currentcolor;\"\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 440.425px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 440.425px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_1dc8c00d-4a92-4599-be36-7fbacacb290f.jpg?v=1780384559\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 440.612px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 440.612px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_b535b8da-097c-4570-9b4a-907828d03e37.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 440.638px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 440.638px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/15_548155b7-667f-45f2-bc6d-4fe35339453e.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr style=\"height: 440.525px;\"\u003e\n\u003ctd style=\"padding: 0px; margin: 0px; border-image: initial; height: 440.525px; border: medium none currentcolor;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/16_8839cd23-9894-459c-b55f-53f4f07f0f32.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003e\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/14_905f87ca-048b-43ed-bffd-3f65d0290663.jpg?v=1780384558\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/22_7bae34ff-ccb3-46bf-803d-ab8b256f1656.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/11_7a80fbdc-98b1-43e4-88a7-821596bfe44b.jpg?v=1780384559\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/12_5ccf9483-25f2-4f95-b5d4-f066d1ca2cf2.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/23_e516d107-1c66-466c-bb86-3ff6c2a92710.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/24_bbc93dd4-c106-4187-816e-d4128d2f5a55.jpg?v=1780384559\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/25_2bd917bc-a8b4-4459-b071-2ea1a446e255.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/27_2e4f837a-f17f-47c5-aff4-67c530a186da.jpg?v=1780384559\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_fa93172c-5692-4945-a4a6-0540da56a267.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/09_5f8f7506-d6ea-4db0-8357-62cb22fb1433.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/10_f6718da0-f2da-4c93-a0b8-de021d6713be.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/26_d3583a98-4ee6-4ff5-a83e-50217bd8964c.jpg?v=1780384560\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003ei-Action\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003ei-Action was established in December 2013, it is an action \/ program \/ platform, by the wide-public love and power, encourage different sectors of the community can also be within its capacity to do their part for humanity to life affect life. We hope that the wide-love and social forces to take practical action to make life affect lives. The first project, point to the leper village in Liangshan Prefecture, look forward to your peers.\u003cbr\u003e\u003cspan\u003eEmail\u003c\/span\u003e：sonyafock@gmail.com\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"阿布洛哈村","offer_id":43467759059062,"sku":null,"price":15.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_0b3a6f0c-695c-4c94-9166-c02d642c9a62.jpg?v=1780383618"},{"product_id":"彎不了腰的女孩-背負不一樣的重擔","title":"A girl who cannot bend the waist - Hei Yi","description":"\u003cp\u003e\u003ciframe width=\"100%\" style=\"aspect-ratio: 16\/9;\" src=\"https:\/\/www.youtube.com\/embed\/CwF1Pcvshkc?si=JitMcCi-Xl0BQh1O\" title=\"【#透視罕見病】彎不了腰的女孩 背負不一樣的重擔\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e‘Mum, will you leave me alone?’ ‘I will never leave you alone!’ This is a real dialogue between a scoliosis patient and her mother. Hei Yi, an eight-year-old girl, is suffering from scoliosis. Two years ago, she went to hospital because of fever. Unfortunately, that is the beginning of her nightmare. At that time, a doctor found her spine has a little bit incline, they transferred the case to Orthopedics department of Princess Margaret Hospital.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_ac3dc966-cfd2-4474-b129-15597b1f063a.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_0e61bb04-c6b7-4440-8c9b-7860b78d2a98.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eOne year later, Hey Yi met with the doctor, but all the information they get is just a lot of numeric data. ‘He just said that there was 44 degree, but I was so confused about what he said, I have no idea on it.’ mentioned by Hei Yi’s mum. The doctor said he couldn’t help and transferred her case to The Duchess of Kent Children's Hospital at Sandy Bay (DKCH).\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_0de46532-fd72-4b8b-8bb2-5c6a6cd7589d.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_4c949d8e-f6b8-4913-9235-36349aca69a9.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eDeferred about 6 months, Hei Yi was diagnosed suffering from Scoliosis in DKCH. The doctor there told her that her spine tilt worsens as 55 degree, she must have the surgery immediately. 40 degree is a critical line, which means Hei Yi has long been need in surgery.\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_d1922534-40fb-4821-a878-5fc0d6dd088e.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07_27cfa0f5-6ecf-4061-8ae9-7ed0669d259f.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e‘I worried about her in every day, I hope there will be miracle.’ Hei Yi’s mum cried, not just in interview, but also in daily life. What Hei Yi’s mother concerned is not about appearance, she worried it will put Hei Yi’s life in danger. ‘I don’t want to be a scoliosis patient’\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/10_b37f815e-d159-4f53-ba77-c4add5b76ff7.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/11_b5c764f2-3d91-4f54-8789-1132a860d9ce.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eHei Yi is afraid to disclose her condition to classmate and friends, her best wishes is to recover as soon as possible, so that she could get back to a normal life. Fortunately, her school was supportive and cooperative; they arrange helpers for Hei Yi when she needs to carry heavy books.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_996b13c4-9d7a-446c-a8d0-5000a5ca4184.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/09_29ef5f2e-f711-4879-9ca2-70cee7d6dd0f.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003eThere are four members in her family, but the total income in not enough for them.\u003c\/h4\u003e\n\u003ch4\u003eHe Yi’s mum said that she never apply for the Comprehensive Social Security Assistance. She believed that they can live on their own.\u003c\/h4\u003e\n\u003ch4\u003eHowever, the surgery fee costs $117,000, which is a tremendous burden for a low income family.\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_bd10d2da-a92f-46b7-a61b-32859ab89dd5.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/14_fdd56f06-a757-4f1c-bf9c-d1b651f744c3.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eA simple wish of Hei Yi’s mum, all she wants is her daughter to have a happy and healthy growth.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWould you help her to make her dream come true?\u003c\/span\u003e\u003cbr\u003e\u003c\/h4\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable width=\"100%\" cellpadding=\"0\" cellspacing=\"0\" style=\"border-collapse: collapse; border: none;\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/12_6bdc946f-a4aa-4a58-ba64-6d6bb1d2ac03.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/13_efeed5d4-0090-424e-81d2-45219a20ed16.jpg?v=1780390719\" style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eThe Society for the Relief of Disabled Children (SRDC)\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003e\u003cspan\u003ePhone\u003c\/span\u003e：(852) 2819 3050\u003cbr\u003eFax：(852) 2817 0322\u003cbr\u003eEmail：info@srdc.org.hk\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"浠兒","offer_id":43467995381878,"sku":null,"price":16.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_e6cc629c-003c-41ce-a91c-386480a2191d.jpg?v=1780389791"},{"product_id":"推開-自閉-的窗","title":"Exploring the World of Autistic Child - Ronn Jim;Clarence Kang;WeiWei","description":"\u003cp\u003e\u003ciframe title=\"推開「自閉」的窗\" src=\"https:\/\/www.youtube.com\/embed\/Wij3DLYbmC4?si=_vKFl9zIk2NO_pUh\" style=\"aspect-ratio: 16\/9;\" width=\"100%\"\u003e\u003c\/iframe\u003e\u003c\/p\u003e\n\u003ch4\u003e\u003cspan\u003eWhat do you really know about autism?\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eAre you willing to move one step forward to know about their world?\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cmeta charset=\"UTF-8\"\u003e \u003cmeta name=\"viewport\" content=\"width=device-width, initial-scale=1.0\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/01_067d960c-c9f5-4d09-bc5c-6f347d456290.jpg?v=1780453599\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/02_c3740930-6af5-4c36-9abc-d53cdfac16f5.jpg?v=1780453599\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/03_dd2233b2-fef5-4f6f-9621-27274ea19154.jpg?v=1780453599\"\u003e\u003c\/div\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eMulti-talent artist – Ronn Jim\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eRonn Jim, 30, a multi-talent artist. “Growing up as an autistic has never been easy.” Jim said. Ronn spoke about his own experience of expressing ideas and thoughts through the medium of art, especially painting. More than that, he hosted a painting exhibition at the University of Hong Kong in April 2015.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eRonn's artwork call out an unity and harmony of all cultures, creeds and leanings. \"Equality creates a happier place for all of us.\" This is the message that Ronn feels very strongly about and wants to share with the world. He hopes his paintings can make people have more reflections on little things in daily life, as well as to raise awareness of people of minority groups.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I hope anyone with autism can have the confidence to not just survive, but to thrive in life.” Ronn said.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/04_dc5bbd7e-b4ac-43f8-8bff-015dfec1af56.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/05_8571ebf9-a970-4e7e-b836-080390a6cbc9.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/06_b13f5372-67c5-4b88-ba00-46ee9c63a346.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/07_96ac04eb-38d7-4ec7-b01b-c300a3087fbe.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eTalent in Music – Clarence Kang\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eClarence Kang , 17, an autistic savant with an extraordinary talent in Music\u003c\/span\u003e\u003cspan\u003e\u0026amp; Art. Kang's mother, music teacher Joyce Lim discovered her son was autistic when he was four. According to her, Clarence's affinity for music was apparent when he was two years old. He liked to sit around the digital piano, later learning to play it on his own, playing by memory and improvising songs.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eClarence's skill in playing the piano is definitely above norm. He started formal training in 2008 but within two years he is able to play many technically challenging pieces. Clarence is an autistic savant who shows prodigious skills. He has the ability to play an entire concerto on the piano after hearing it and without the needs of any piano scores at most of his performance.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eJoyce recalls that Clarence, the youngest of her three children, liked to hold on to her hand since he was young, even when she was driving. \"I could feel his insecurity,\" she said. “This is supposed to be the inner voice of autistic kids. I hope the public will understand them because they do have a lot of feelings, but it's difficult for them to express them verbally,” she explained.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I wouldn't change the fact that he has autism, it is part of him and it makes him who he is. Society seems to want to normalize children, but we want it to be accepted that Clarence is different.” In order to let society know about special children, to understand, to care and to give them more opportunities, Joyce tries to let Clarence accept as many invitations to perform at charity events as he can manage.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e” It’s meaningful to let the public know ‘Different isn't worse; it's just different.’” Joyce said.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/08_0e80c226-c64b-4040-ae7c-50dcdaf6da53.jpg?v=1780454443\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/09_a00b9ee6-3e14-455d-a08d-c80219a2cf06.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/10_d1692d6c-1c22-41bc-a92f-47feefd608ba.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/11_ef22fb0c-a024-4967-a1f6-825495062fd6.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/12_e3f9d200-1b6a-45b7-aecf-98bbb559492b.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/13_0f2875eb-7cd7-4f7d-b11d-d5919a9133ee.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 42, 0);\"\u003eA cheerful young boy- WeiWei\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan\u003eWei Wei, 10, was diagnosed with Autism at the age of 2 while his brother also diagnosed as ADHD. Wei’s mum knew that there was something different about her son. After two years of frustration and he was finally diagnosed with autism, she was collapsed.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“For a long time I am trying to figure out ‘what just happened to my life?' I feel sorry for myself and for my kids. I was lost, confused and in many ways” Wei’s mum said. Unfortunately, her husband couldn’t accept WeiWei’s situation and had an affair, she had to take care of the whole family with bearing financial burden.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eIndeed, both of her sons are very friendly and happy, the elder brother always help with housework and taking care of WeiWei. “When mammy asks me to go to bed, I go; when mammy asks me to eat, I eat”, said WeiWei.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003e“I don’t know if the society would accept them when they group up? I just hope people don’t feel awkward when they’re around my sons. I wish my sons wouldn’t be weirded out because they need love.” WeiWei’s mum said.\u003c\/span\u003e\u003c\/h4\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\n\u003ctable style=\"border-collapse: collapse; border: none;\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/14_8be9f21b-cc23-4a4a-a3c0-e68ad2d29bd9.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/15_15c30935-4ee8-4488-965b-3f71bef1b106.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/16_af9e19d3-ccd3-4406-b40e-ee290d53cead.jpg?v=1780453599\" alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"padding: 0; margin: 0; border: none;\"\u003e\u003cimg style=\"display: block; width: 100%; height: 100%; object-fit: cover; min-height: 400px;\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/17_7fd3d8a5-e430-426d-9c25-1ce081a71f12.png?v=1780454650\" alt=\"\"\u003e\u003cimg alt=\"\"\u003e\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003c\/td\u003e\n\u003c\/tr\u003e\n\u003c\/tbody\u003e\n\u003c\/table\u003e\n\u003ch4\u003e\u003cspan\u003eThe autistic children encounter various problems in understanding, communication, social contact, behavior, emotion and learning.\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eWith early diagnosis, treatment and training, together with the acceptance, assistance and care from our society, the autistic children can also live a happy and meaningful life.\u003c\/span\u003e\u003cbr\u003e\u003cspan\u003ePlease give your generous support!\u003c\/span\u003e\u003cbr\u003e\u003cbr\u003e\u003cspan\u003eEach coin of your donation will fuel the vigor of the autistic children. Talent in Music – Clarence Kang\u003c\/span\u003e\u003cspan style=\"font-size: 0.875rem;\"\u003e？\u003c\/span\u003e\u003c\/h4\u003e\n\u003cp\u003e\u003cmeta charset=\"UTF-8\"\u003e \u003cmeta name=\"viewport\" content=\"width=device-width, initial-scale=1.0\"\u003e\u003c\/p\u003e\n\u003cstyle\u003e\n    * {\n      margin: 0;\n      padding: 0;\n      box-sizing: border-box;\n    }\n    body, html {\n      width: 100%;\n      overflow-x: hidden;\n    }\n    .img-container {\n      width: 100%;\n      display: flex;\n      gap: 2px;\n    }\n    .img-container img {\n      flex: 1;\n      width: calc(100% \/ 3 - 4px);\n      height: auto;\n      object-fit: cover;\n      display: block;\n    }\n  \u003c\/style\u003e\n\u003cdiv class=\"img-container\"\u003e\u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/18_96f1f005-0a47-430e-8315-d7105a0afd2a.jpg?v=1780453599\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/19_007f55b3-ce84-4115-8336-80c00397c4df.jpg?v=1780453599\"\u003e \u003cimg alt=\"\" src=\"https:\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/20_3a6f04f3-b74e-4f84-aaaf-b40c768ba11f.jpg?v=1780453599\"\u003e\u003c\/div\u003e\n\u003cstyle\u003e\n         .text-box {\n            width: 400px;\n            padding: 16px 20px;\n            margin: 10px 0;\n            color: #ffffff;\n            border-radius: 6px;\n            font-size: 14px;\n            background-color: #E6275A;\n            width: auto;\n        }\n    \u003c\/style\u003e\n\u003cdiv class=\"text-box dark-red\"\u003e\n\u003ch3\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003eAnAn International Education Foundation of Hong Kong\u003c\/span\u003e\u003c\/h3\u003e\n\u003ch4\u003e\u003cspan style=\"color: rgb(255, 255, 255);\"\u003ePhone：(852) 2596 0777\u003cbr\u003eEmail：info@ananedu.org.hk\u003c\/span\u003e\u003c\/h4\u003e\n\u003c\/div\u003e","brand":"Lifewire HK","offers":[{"title":"詹朗然;江政偉;威威","offer_id":43469959528566,"sku":null,"price":17.0,"currency_code":"HKD","in_stock":true}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/0651\/3934\/3478\/files\/00_bdeb9e45-02d4-43b4-ac58-31ef9f6e22df.jpg?v=1780453579"}],"url":"https:\/\/www.lifewire.hk\/en\/collections\/causes.oembed","provider":"Lifewire HK","version":"1.0","type":"link"}