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Perspective on rare diseases: Duchenne's muscular dystrophy - "muscular dystrophy little warrior" - wheelchair unobstructed my world
No. 3604
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!”
  • 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!”

    A child with Duchenne's muscular dystrophy, gritted his teeth and spit out from his heart, it was hard to hear.

     

    "To cure the illness, we must persist, we must continue to persist and we will be able to feel better!”  The first ten years of life should have been the joyous years of many children.  But as far as for Tze Kin, a rare disease that can't be cured has made him suffer a lot.

     

     

    “My name is Chan Tze Kin.  I am nine years old.  I have Duchenne’s muscular dystrophy, which is called DMD.”  Tze Kin in his wheelchair silently told us his condition.

     


     
    The newborn Tze Kin was no different from other ordinary children.  He was also cute and smart.  Unexpectedly, a diarrhea and a diagnosis report at the age of six months caused the family to fall into the abyss of despair.  “It was found that his liver enzymes were much higher than normal.  Once mistakenly thought of hepatitis.”  Wandering around Hepatology, Laboratory, and Neurology departments, no one could not find the cause.  Because of his young age, he could not have the needle penetration into the muscle to check.  Could not have the DNA test locally.  After here and there, he eventually returned to Hong Kong and went to the Accident and Emergency Department for re-examination again.  At his age of one and a half years old, he was diagnosed with Duchenne’s muscular dystrophy.  “Hold Tze Kin tightly at home and cried for a long time.  Then I told myself, and I need to cherish the time I have with him.”

     

    Degradation and shrinkage - Average life expectancy is 18 years

    The incidence of this rare disease is one in five thousand.  There is no way to cure this disease.  Muscles will gradually atrophy and necrosis.  This will not only affect the patient’s mobility but also affects the cardiopulmonary function.  Under a worst situation, the patient needs to depend on the ventilator.  “Doctor told us that when Tze Kin is at the fifth or sixth grade of elementary school may not be able to walk.  The average age of the children who suffer this disease could only make it to 18 years old.  I just can’t accept it!”  The reporter still remembered that when he met Tze Kin last year, he was still able to walk.  Less than a year later, he has degraded to the point of fully relying on wheelchairs to commute.  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.  “It's more difficult to take care of him now since he couldn’t walk.  We felt it was really difficult simply to take a step or two.  Sometimes it took more than ten or twenty minutes to walk just for a step or two.”  Before, he could still manage to go to the park to play slides or go to his favorite beach but now cannot.  Because of the lack of facilities for the disabled in many places, it’s like a big battle whenever they go out.”

     

    Pouring water is not strong enough - to crawl into the house

    My hands are weak.  I cannot even hold a soda.  Not to mention on the management of a simple daily life.  “When I want to pour water, I can't even hold a pot of water.”  My legs are weak.  Once I sit down, I can't stand up by myself again.  “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...”.  “Taking care of Tze Kin is a challenge!”  Daily life is overwhelming for his mother.  “The place where we live is not designed for the disabled.  Shower or the kitchen is not designed for him although he may want to cook and we need to help him to do everything.”  Watching children grow up is the greatest hope for all parents.  But growing together with Tze Kin, his mother is worring.  “I was sweating profusely after holding him each time.  It’s just so hard.  I took a big breath of relief.  How long could I stand with my limited energy and willpower?  How could he be degrading?  We can’t grasp it.  We even don't know whether he could bear the change of the degrading?”

     

    Traveling to seek medical treatment - overcoming pain with persistence

    Even though doctor said that there are no medicines to cure his disease at this moment, they still seize every opportunity to have the treatment.  Cycling, electric wheelchairs, hydrotherapy, and seeing all these could not significantly help Tze Kin to improve his condition.  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.  No matter whether we need to travel frequently between China and Hong Kong to receive different Chinese treatments.  Having acupuncture and moxibustion is very painful.  Taking Chinese medicine is bitterness.  This young man holds on tight with his determined heart and clenched his teeth to keep on going.  “In order to cure this disease, I must persist.  I must persist to make the change and feel better.”
     

    Being spoiled and not indulging - life education through disease

    His road to maturity is more circuitous than others.  His mother did not spoil Tze Kin.  In his daily life, some seemingly simple self-care matter is also a challenge to Tze Kin.  Sometimes he chose to give up and just rely on his mother.  But his mother knows that she cannot let her son develop a habit of dependence.  She will first motivate him by saying “you can do it!”  Motivate him to first try and see if he could self resolve the matter.  If it doesn't work, she will use other ways to guide him.  Sometimes he can’t stand up.  Tze Kin will inevitably get discouraged.  At this moment, he seems always hears “Try a little stronger, give a little more energy!”  Maybe it is because of his parents’ teaching that makes Tze Kin slighly stronger than those ordinary children.  It is both painful and bitter process but he can make it through each time.  This rare disease makes Tze Kin different from his peers.  But his mother uses this opportunity to teach him equality.  Some unintentional actions among companions may affect his little mind.  As simple as playing with the kindergarten classmates, because others are running fast and not waiting for him that will make him feel unhappy.  “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.”  It seems like a lesson to my son but it is more an affirmation to him.  He, is exactly the same as other children where there are no differences. I will tell him that everyone is equal.  His thought should not think that because he is a disabled, other people should provide or give me more opportunities than others.  In fact, everyone is fair!”

    Sensible and filial - still comforted in suffering

    During 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.  When preparing for meal, Tze Kin did not “bury his hands and wait for the meal”.  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.  But there is nothing that touches his mother’s heart most about his son was when she once was sick.  “I was most impressed once when I was so uncomfortable.  When I returned home, I noticed I have fever.  At that time, he was still a little boy.  But he still twisted a towel to put it on me.  When I rested in my room, he mopped the floor.  I was still so uncomfortable when I woke up late at night.  I was thinking: Why he did not go to bed even late at night.  I was still thinking and want to question him.  When I went to the living room and saw that he mopped the floor although all over was water.  Talking about this sweet memory, a sweet smile appeared on his mother’s face.  "I was so happy.  Tze Kin was so little but know well how to take care of myself and helped with the housework.  Sometimes, he saw me doing all the housework, it’s tough.  He will hold me tight and kiss me, and said “Mommy, thank you for your hard work”.  Sometimes, I cook and he will say “Thank you, Mommy, thank you for your hard work in taking care of me, cooking for me.”  The personal understanding and heartfelt words became the motivation for the family to step through the gloom.


    Learn to enjoy life - overcome difficulties and seek ideals

    While many parents are helping their children to grow and learn, Tze Kin’s mother’s only wish seems very simple.  “I don't want him to have all the A’s for their study.  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.”

    Perhaps because of his illness, his mother cherishes more to let her beloved son enjoy the beautiful youthful time.  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.  In addition, she could help her loved son to cultivate a lot of interests.  Cooking, table tennis, and building lego, etc. can make him play for the whole afternoon.  You may not even see that he is a “dancing master”.  Although he can’t swing his whole body with the music, he still loves to have wheelchair dance.  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.  “The stage can express my feeling and people know how I feel.”  He devoted himself to the music and made him dance more passionately than the dancers, not inferior to them.  He is cheerful and talkative and even said he wants to be a "Youtuber" and share his daily life with netizens!
     
    But what makes Tze Kin most proud of is that he is no different from others.  “I am in a wheelchair but I do a lot!”  The disease did not wear his will and he learned to cherish his time and dare to challenge, to make my dream come ture.  And my mother also hopes to spread Tze Kin’s life and drivers to more people through his life education.
    The youngest son is ignorant and does not know why his mother would cry in tears.  But, by embracing each other, they still bring warmth and support to each other.  He has gone through many hardships at his young age.  When he was in kindergarten, he was once rated as autistic by the assessment center because of speaking less.  “At that time, doctor told us that it is not a big deal because of autistic as it is very common.”
    In front of the camera, Tze Kin is very talkative.  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.  Fortunately, after transferring to a new kindergarten, he met with very good teachers and principal who provided a lot of help and training.  After entering elementary school, he became more cheerful and willing to talk to strangers.  After re-examination, he was not autistic.  This made his mother a sigh of relief.  Yet as Tze Kin grew up, the burden on his mother’s shoulders became heavier.
     
    It is hard to go through the process.  But, as a mother, she will never give up.  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.  Social worker will help us as well.  That’s how the family go through these years.
     

     

    Understanding rare diseases: What is Duchenne muscular dystrophy?

    Patients have weak limbs due to muscle disease and their calf muscles are usually abnormally enlarged (Pseudohypertrophy).  If we lightly press these muscles with our hands, we will find that the muscle has a different texture.  Since the normal tissues of these muscles are replaced by hardened tissues, the calf muscles feel firm when they are touched.


    With age change, the patient’s muscle lesions and atrophy become more and more serious.  By the age of 12-13, patients need to rely on wheelchairs to move around.  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.  The patient’s heart muscle will also be changed due to the disease, leading to cardiomyopathy.  In severe cases, arrhythmia, heart failure and other diseases may occur.

     

     

     

     

     This cause's reference number is “3604”, referral from Hong Kong Neuro-Muscular Disease Association.

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    All funds raised for this cause will be donated to
    Hong Kong Neuro-Muscular Disease Association
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  • 夢想成真做YouTuber

     

    奮力追夢的梓鍵一直努力學習剪片,不停成長。早前他在Facebook號召大家支持他的YouTube頻道「蝸牛仔梓鍵」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。」

     

     

     

    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。

     

    2021年6月更新

    贈獎學金予Lifewire

     

     

    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。
    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。
    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。

     

    2021年5月更新

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