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  • Causes of Rare Diseases

  • Causes of Rare Diseases

There are hundreds of people close to us seeking medical funding support. With your generosity and their courage, together we can make miracles happen.
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24
Establish Date: 2021-06-07
Child with Muscle atrophy – “Just let him live as long as he can
“Mummy…” His mother hurries to come and fit the tube for him.
“Mummy…” His mother rushes to come and turn him around.
“Mummy…” His mother stretches out a hand to switch the TV channel for him while busily taking care of his younger siblings.
He is 11 years old, with normal intelligence, but an abnormal body.
“Do you know what disease you have?” The naive little boy answered with his slightly weak voice, “ I don’t know.”
All 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.
93%$557,499 of $600,000
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天使綜合症
24
Establish Date: 2018-04-03
透視罕見病：天使綜合症　長不大的天使 帶笑落入凡間
她，愛咧嘴而笑，卻不懂說話。她，四肢健全，卻不能自理。
天使讓人既憐且懼，全因罕見得無法根治，欲救無從。
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。
96%$570,480 of $600,000
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83
Establish Date: 2020-01-03
脊髓肌肉萎縮女孩 越過生死線 盼做女作家
長卧輪椅、無法進食，不斷退化…..被判僅八歲壽命，她卻跨進第十三個年關。
死亡？「好遙遠，我仲有大把青春！」自信與安心，來自24小時侍候的媽媽。「兩母女生生死死一齊，幾幸福呀！」
91%$725,036 of $800,000
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112
Establish Date: 2024-04-22
思想被困身軀 腦癱少女說不出的抉擇人生
「想食豬扒飯還是雞扒飯？想食豬扒飯望呢邊」，媽媽邊說邊搖一搖自己舉在家琦眼前的左拳頭，「想食雞扒飯就望呢邊」，又搖一搖右拳頭。躺在沙發上不能言語、不能控制身軀的陳家琦，來回掃視媽媽的雙手後，目光最終停在左手，用雙眼告訴媽媽她的選擇。
無論是豬扒飯雞扒飯、想坐輪椅還是坐梳化，母女間透過不斷的選擇題溝通。但在家琦呱呱墮地一刻，便面對了人生最大選擇題：生還是死。
13%$12,100 of $100,000
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113
Establish Date: 2024-01-26
肌萎港大畢業生 認病不認輸
由小學突然經常跌倒開始，
杜興氏肌肉營養不良症迫衞錕學懂接受，
接受以輪椅為伴、做不了夢想職業、拿不起相機……
但卻不能令他接受--放棄：
「好多嘢都可以嘗試，唔好因為個病就覺得所有嘢都做唔到。」
36%$70,371 of $200,000
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113
Establish Date: 2022-07-07
小兒麻痺鬥士 耗盡一口氣燃亮他人
長坐輪椅，氣若游絲；年近六旬，但體重不足50磅。
長伴他的，還有掛於臉上輸送着氧氣的「貓鬚」。
沒有氧氣機，他連踏出家門覆診也沒機會，甚至幾近沒命。
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。
「我唔係一世都要人幫，做得到嘅、有能力嘅要去幫人！」
71%$141,570 of $200,000
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113
Establish Date: 2020-08-31
全港唯一罕病 抽搐無間「植物」男孩
媽媽：不求生命闊度 只求延長壽命
龍鳳胎呱呱落地。
媽媽心願是大手握小手，遊歷世界。
一歲半起，這雙手，日夜也未能歇息。
白天，大手握小嘴，送走嚨中痰。
晚上，大手握小手，陪睡生死邊緣。
「我帶佢嚟呢個世界......佢有生存權利......感受呢個世界」
100%$894,705 of $900,000
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158
Establish Date: 2018-06-22
Perspective on rare diseases: Duchenne's muscular dystrophy - "muscular dystrophy little warrior" - wheelchair unobstructed my world
Accompanying childhood were slides, chocolates, running wildly around beaches and courts.
Accompanying him are Chinese medicine, acupuncture, and a wheelchair that has been with him for a long time.
“It’s so sad,” “It’s painful,” “But for the sake of an illness, you have to persevere and continue to persevere!”
91%$635,690 of $700,000
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 Accompanying him are Chinese medicine, acupuncture, and a wheelchair that has been with him for a long time.
“It’s so sad,” “It’s painful,” “But for the sake of an illness, you have to persevere and continue to persevere!”%0D%0A https://www.lifewire.hk/en/Causes-And-Campaign/Causes/Duchenne-Muscular-Dystrophy.html">
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162
Establish Date: 2020-09-25
A young girl with spinal muscular atrophy, fighting to save her friends. “Every day I’m alive is a gift.”
Admitted 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.
This is the story of a resilient warrior suffering from Spinal Muscular Atrophy.
This is Josy Chow’s story.
91%$813,818 of $900,000
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165
Establish Date: 2020-01-07
Only Two Precedent Cases Globally
Siblings Fighting Rare Disease with Laughter
This 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.
92%$825,557 of $900,000
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