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  • 47
  • 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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114
Establish Date: 2018-09-13
罕見病X File 少女3年間變多重殘障
「你患了什麼病？」
「我不知道！我都好想知，邊個講到畀我知…」
89%$487,920 of $550,000
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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
117
Establish Date: 2017-06-20
Daughter with incurable disease - degenerating day after day
Mom: I am waiting for you to say you love me.
The rare disease “Rett Syndrome” is caused by mutations in the congenital gene MECP2. It is a neurological disease that seriously affects children’s psychomotor development. It cannot be prevented and there is no effective treatment.
93%$830,336 of $900,000
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141
Establish Date: 2019-03-06
放棄自殺 小腦萎縮青年：「我選擇生存！」
18歲，獲人生最大生日禮物 --- 絕症！
「咩都可以做」，變成「咩都做唔到」。
燒炭準備好，卻選擇輪椅上繼續求存。
「我選咗唔死，就要接受！」
重生了，他只盼以生命感動生命，歧視不再。
107%$427,068 of $400,000
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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
144
Establish Date: 2017-09-27
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
我，學習比人遲緩…… 我，總惹來奇異目光…… 我，滿腦腫瘤隨時器官衰竭卻表達無從…… 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...
206%$615,485 of $300,000
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145
Establish Date: 2024-02-21
肌萎少女 輪上逆風展翅
三指之力 畫出未遊歷的前路風景
「你哋SMA啲人都好叻㗎噃，個個都讀到大學。你會唔會都讀到大學呀？」
「你唔好咁諗住喎，應該唔會喎。」
「點解呀？」
「如果我畀咁多希望你，失望時你咪更傷心？」
以上乃患上SMA(脊髓肌肉萎縮症) 的謝踔柔 (YY) ，與媽媽的日常交流。
34%$50,400 of $150,000
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145
Establish Date: 2023-08-31
Semi-paralyzed girl with a rare spinal glial tumor loves to adventure
"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.
58%$228,890 of $400,000
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145
Establish Date: 2023-08-14
Brothers with Mucopolysaccharides
The mother Just wants to hear her elder son say ‘Mummy’ again

A seemingly simple wish is far from being fulfilled.
A family of four with two lively and adorable sons was supposed to be a picture of a happy family, but it was suddenly discovered that both sons were suffering from the rare disease Mucopolysaccharidosis IIIA (MPS IIIA). The older brother's bodily functions and IQ had deteriorated to that of an infant, and he was unlikely to live past the age of 14. His parents only hope that the experimental stem cell therapy that his brother is receiving will reverse his condition.
18%$68,960 of $400,000
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145
Establish Date: 2023-02-24
罕病男孩青光眼走向黑暗
母克服抑鬱點亮兒子生命
「下一站係咩呀？」「下一站朗屏，跟著天水圍、兆康…」
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。」
49%$145,776 of $300,000
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145
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。」
72%$215,959 of $300,000
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145
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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