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Love can make all the difference.
At Lifewire, we believe that love has the power to change society. Lifewire is Hong Kong’s very first charity crowdfunding platform for children with rare diseases. By documenting and sharing patients’ stories with the public, we bring together patients, charities, donors, and medical experts into a tightly-knit community to provide a channel for those in need to receive help.

Only Two Cases Worldwide
Siblings combat rare disease with smiles

“We can’t afford for them to visit the doctor at the same time, they have to take turns.” – Yau Chun & Ka Wa’s Dad

Chen Yau Chun, Chan Ka Wa
Hereditary Spastic Paraplegia

Chen Yau Chun, Chan Ka Wa
Hereditary Spastic Paraplegia

Nonstop Spasms, Sleep Apnea 80 times an Hour
Every night is a miracle for boy with SSADH

“I tuck him into bed every night, not knowing that he’s fighting on the brink of life and death. I feel so guilty” – Junjie’s Mom

Ho Junjie, Alexander
Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)

Ho Junjie
SSADH

Little Miss Sunshine: “No crying! No pain! I want to get better!”

“Daddy, thank you! I love you!” - Hei Yau

Bux Hei Yau Annie
Developmental Dysplasia of the Hip (DDH)

Bux Hei Yau
Developmental Dysplasia of the Hip

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 wi

Hui Wai cheung, Hui shing hao
Mucopolysaccharidosis IIIA

Estimated 4 years Left to Live
14-year-old “Dream Chaser” won’t let SMA stop her

“Even if I only have my eyes left, I want to live!” - Kwan Yi

Lai Kwan Yi
Spinal Muscular Atrophy

Lai Kwan Yi
Spinal Muscular Atrophy

Skeletal Deformation and Scarred Organs
Boy with MPS: “I am not giving up!”

“My parents give me strength when they hug me, it’s the power of love!” - Long Long

Chu Yat Long
Mucopolysaccharidoses Type VI

Chu Yat Long
Mucopolysaccharidoses Type VI

DMD Warrior: Your hug carries me through

“I am also suffering, we’re not sure what is going to happen to him next. How much can he bear on his own?” - Tsz Kin’s Mom

Chen Tsz Kin
Duchenne Muscular Dystrophy (DMD)

Chen Tsz Kin
Duchenne Muscular Dystrophy

Treading the line between Life and Death
Aspiring 13-year-old Writer with SMA

“I like to read and write stories, I want to be an outstanding writer when I’m older!” – Sum Yuet

Yiu Sum Yuet
Spinal Muscular Atrophy Type 1

Yiu Sum Yuet
Spinal Muscular Atrophy Type 1

Two fingers left – Girl with SMA fights to live to the fullest

“Maybe I can turn this disease into my strength to help others.” – Josy

Josy Chow
Spinal Muscular Atrophy

Josy Chow
Spinal Muscular Atrophy

Girl with TSC gives back to society through painting

「瑤瑤平時好鍾意講「媽咪，我好錫你」，希望佢可以清楚表達自己嘅意願！」- 瑤瑤媽媽

Michelle Lam
Tuberous Sclerosis Complex

Daughter with Rett Syndrome; Rapid Regression
Mom: "Waiting for the 3 little words"

“Ka Yan seems like a cocoon being bound inside. It’s very hard and difficult if the situation could not be released. We don’t understand her. That’s why she feels very hard and difficult and it is the same for us.” - Ka Yan's Mom

Sze Ka Yan
Rett Syndrome

Forever Smiley Little Angel

“Whenever she nods in response, eats by herself, goes to the bathroom on her own, wears her own shoes…these all bring me so much joy!” - Chloe’s Mom

Chloe Chan
Angelman Syndrome (AS)

Chloe Chan
Angelman Syndrome

At death’s door: “Son, I’ll take care of you till the very end”

“As long as you’re here, I’ll be by your side to take care of you” – Kwan Lam’s Mom

Edward Young Kwan Lam
Duchenne Muscular Dystrophy

Boy with Muscular Dystrophy, “Let him live for as long as he can”

“I just want him to be happy, in the future I hope he’s happy too.” – Chun-Ting’s Mom
Muscular Dystrophy and Neurological Disorder

Lok Chun-Ting
Muscular Dystrophy and Neurological Disorder

The Spinal Muscular Atrophy Girl: Soaring Against the Wind on Wheels
The Power of Three Fingers: P

"It turns out that while heaven has taken some things away from her, it also gives her other abilities. The reality of the illness is right in front of you; it’s up to you how you choose to move forward." - Cheuk Yau's mom

Tse Cheuk Yau
Spinal muscular atrophy type 2

Semi-paralyzed girl with a rare spinal glial tumor loves to adventure

“I want to explore the world, I love history, I want to see the historical sites, I want to know what happened.” - Kiki

Yeung Ka Ying
spinal glial tumor

Rare Disease Boy with Glaucoma Facing Darkness
Mother Overcomes Depression to Illuminate Her Son's

“What's the next stop?”
“The next stop is Long Ping, followed by Tin Shui Wai, Siu Hong…”
In the West Rail line, 11-year-old Pok Yin doesn’t lift his head, reading out the stations in his mind one by one.
He has memorized the route by heart, all because his mother, Lam, takes care of him, her son who has the rare disease RSTS Rubinstein-Taybi Syndrome. She wants her son, who is nearly blind with 1900-degree myopia, to be prepared for the future: “Even if he can’t see anything in the future,

Lam Pok Yin
Rubinstein-Taybi disease (RSTS)

"Rare Disease X File: Girl Becomes Multiply Disabled Over Three Years

"What disease do you have?"
"I don't know! I really want to know, but who can tell me...?"

Hester Chan
Unknown rare disease

母子同病變 無懼連環醫療失誤 勇抗不治症

「我感受到好多挫折，好多唔開心、唔愉快嘅事情，我真係覺得點解我自己要生存喺呢一度。」- 黃偉龍

Wong Wai Lung
ATAD3A

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。

曾錦源
小腦萎縮症

「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。」

羅紫羽
羅素西弗氏症

透視罕見病：黏多醣症(一) 長不大的小飛俠 勇抗退化惡疾

「佢哋笑我小矮人……冇人同我做朋友……」
「我想爬上去！我要爬！」他咬緊牙關嘗試攀上滑梯，用盡力氣卻仍然停留在起點……

蕭曉進
黏多醣症四型

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。

陳家琦
徐動型腦癱(徐動型腦麻痹)

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。」

蔣衞錕
杜興氏肌肉營養不良症

無力揹水樽 難阻飛翔夢

「無法接受啦，見到囝囝咁樣，心情好難受、好難過。」 苦，寧可自己受；可是……

莫皓翔
脊柱側彎症