29/05/2026
活出力量（5）：打破魔咒，助人自助
我是周佩珊，是一名 SMA 一型患者，也是脊髓肌肉萎縮症慈善基金 (“FSMA”)的小編。
在以前沒有藥物治療的日子裡，SMA 一型是最嚴重、也最令人絕望的。高達 90% 的患兒會在兩歲前死亡，是最致命的兒童遺傳病之一。但我很幸運，在媽媽和醫護人員的悉心照料，以及許多人的支持下，我不單打破了這個「2歲魔咒」，還在 17 歲那年成功出院。後來，我更考上了港大英文系，成為全港首位港大碩士畢業的 SMA 一型患者。
這條充滿荊棘的路上，FSMA的創辦人及主席 - 霍博士是我家希望的啟蒙者。我們第一次見面是在廣華醫院，當時我只有 4 歲，天天只能看著醫院白茫茫的牆壁，看著隔壁床的院友一個一個出院回家，過上小丸子般的校園生活。當我和媽媽得知霍博士的兒子 Howard 也是一型患者，而且竟然可以出院回家時，一道希望之光從此照進我的世界——原來，我也有機會可以回家，不用在醫院悶死！
認識不久後，霍博士和媽媽就安排帶我去了海洋公園玩。那是我人生中第一次離開醫院出去見識世界。看著海豚表演跳躍、呼吸著外面的空氣，我當時心想：這個阿姨比天天幫我治療的醫生還要厲害呢！因為醫生從來沒有帶我出去玩過。雖然出院的夢想足足等到了 17 歲才實現，但真的很感謝霍博士，給了我們堅持下去的希望。
時至今日，雖然面對政府的收入限制，但我從未想過停下腳步。現在，我在本會擔任小編，也是兒童家居呼吸支援會（PHRESS）的兼職總幹事，我希望能用自己的知識和文字為有需要的家庭發聲，藉著工作回饋社會上許多幫助過我的人。同時，也盡一己之力「養家」，報答媽媽多年的辛勞，真正實踐助己助人。
只要心中有光，哪怕身體受限，我們一樣可以活出有力量、有貢獻的人生。
如果佩珊打破命運、回饋社會的故事感動到你，請支持本會，讓我們能繼續支援更多 SMA 患者及家庭，讓他們在逆境中看見希望。
立即捐款: https://www.fsma.org.hk/donate
Living Strong (5): Breaking the Curse, Helping Myself and Others
My name is Josy Chow. I have SMA Type 1, and I am also the social media editor for Families of SMA Foundation (“FSMA”).
In the past, before disease-modifying treatments were available, SMA Type 1 was the most severe and heartbreaking form of the condition. With up to 90% of infants could not see their 2nd birthday, it was one of the most fatal genetic diseases in children. But I was incredibly fortunate. Thanks to the dedicated care of my mum and medical team, along with the support of so many people, I didn't just break this "two-year-old curse"—I successfully left the hospital at the age of 17. Later, I even majored English Studies at HKU, becoming the first SMA Type 1 patient in Hong Kong to graduate with an HKU master's degree.
On this thorny path, Dr. Fok (Founder & Chairman of FSMA) was the one who sparked hope for my family. We first met at Kwong Wah Hospital when I was only four years old. Back then, all I could do every day was staring at the blank white walls of the hospital, watching the patients of the beds around me leaving for home and enjoying a school life just like Chibi Maruko-chan. When my mum and I found out that Dr. Fok’s son, Howard, was also a Type 1 patient and could actually live at home, a ray of hope instantly shone into my world. I envisioned my chance to go home instead of being bored to death in the hospital!
Not long after we met, Dr. Fok and my mum arranged a trip for me to Ocean Park. That was the very first time in my life leaving the hospital to see the outside world. Being able to watch the dolphins leap into the air and breathe in fresh air, I thought to myself, "this auntie is even more capable than the doctors who treat me every day! The doctors have never taken me out to play" Although my dream of being discharged took until I was 17 to finally come true, I'm profoundly grateful to Dr. Fok for giving us the hope to keep going.
Today, despite facing government income restrictions, I've never thought about slowing down. Currently, I help as a social media editor for FSMA and serve as the part-time Project Coordinator of the Paediatric Home Respiratory Support Society (PHRESS). I hope my knowledge and writing can speak up for families in need to return to the many people in society who have supported me along the way. At the same time, I want to do my best to support my family and repay my mum for her years of selfless devotion. Helping myself while helping others is my motto.
As long as there is light in your heart, even if you have immense limitations, you can still live an active life that is full of purpose.
If Josy’s story of defying the odds and giving back to society touches your heart, please support FSMA so we can continue helping more SMA patients and their families find hope in the face of adversity. 🙏🏻
Donate NOW: https://www.fsma.org.hk/donate
#活出力量
