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  • 42
  • 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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195
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。」
28%$54,346 of $200,000
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225
Establish Date: 2022-04-07
「拇指姑娘」需日打激素 醫生難料成長變數
安徒生童話裏的「拇指姑娘」精靈小巧。
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。
但現實生活裏，他們還要面對長短手腳、脊柱側彎、餵食困難……
就像紫羽便要天天注射生長激素、面對副作用……直至成年。
媽媽落淚：「能夠維持佢(紫羽)正常營養、正常生長已經好開心。」
64%$191,529 of $300,000
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225
Establish Date: 2021-06-07
Child with Duchenne’s muscular dystrophy – “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%$556,769 of $600,000
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225
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%$725,856 of $800,000
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225
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」
93%$834,600 of $900,000
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225
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.
91%$723,872 of $800,000
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225
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%$633,450 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://lifewire.hk/en/Causes-And-Campaign/Causes/Duchenne-Muscular-Dystrophy.html">
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246
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%$724,806 of $800,000
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246
Establish Date: 2019-07-10
Young Girl with Spinal Muscular Atrophy Chasing Dreams
“I still want to live, even if all I can do is see with my eyes.”
At 14 years old, she’s completely wheelchair-bound. Her estimated life expectancy? Only 18 years.
“Everyone needs to face death one day,” she said as a matter of fact.
Others 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.
“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!”
That’s Kwan Yi Lai, who suffers from spinal muscular atrophy.
89%$576,529 of $650,000
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246
Establish Date: 2019-04-15
容易脫骹的「小丸子」：
「我想做開心人！」
四歲，經歷三次手術。
脫骹、手術，脫骹、手術…卻又重返原點。　
全因她得了無法根治的「發展性髖關節發育不良」。
這小天使卻總笑着說：
「No喊！」「No痛！」「我要好返！」
93%$507,171 of $550,000
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