Causes of Rare Diseases

41

Establish Date: 2018-10-29

骨骼變形器官受損
黏多醣症男孩：「我不放棄！」

9歲的年紀，6歲的個子。
嘗過生死一線、管他「大部份得20歲命…」之說。
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。」
「我係無畏無懼嘅！」

94%$698,217 of $750,000

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64

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.

91%$590,587 of $650,000

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65

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%$507,201 of $550,000

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70

Establish Date: 2022-08-16

母子同病變無懼連環醫療失誤勇抗不治症

「Roll機，準備，ACTION！！」
18歲，有着長不大的「童顏」；全因尚未發育，已先退化。
延醫、連番誤診，雙重罕見病，帶來無盡的手術與折磨。
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……」
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。
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。

67%$198,201 of $300,000

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70

Establish Date: 2021-09-24

鬼門關搶救肌萎兒母：「照顧你到最後」

「我諗住長命百歲！」
5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。
能伴隨兒子走到最後一刻，已是媽媽的最大回報。
「你一日喺度，我一日都會喺你身邊照顧你，知唔知呀！」

89%$528,422 of $600,000

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192

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%$487,720 of $550,000

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195

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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219

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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222

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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223

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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