Putting Brains in Muscles

Towards an Accessible Web-Based Health Education Platform on Neuromuscular Diseases

Imperfect Perfection

Imperfect Perfection

I, Josy Chow, have an ordinary name, ordinary lifestyle, but a ridiculously perfect life.

I was born with Spinal Muscular Atrophy (SMA). On the day I was diagnosed, my mom was told that I could not pass my second birthday – a capital sentence was imposed. She cried days and nights, searched for any possible treatments to save her beloved daughter. However, SMA was killing me brutally and rapidly. It stole my breaths and stopped my heartbeats and my mom had neither time to understand what’s happening nor think about my future, while hospital became my second home before one-year old due to serious respiratory complications. The only thing in her mind was: KEEP MY DAUGHTER ALIVE.

As unrealistic as it may seem, my mom ignored the death sentence and confinement of SMA made on me from day one. Although floods of tears ran down from her face, every tear consisted of hope. I am always grateful for God responding to her persistent prayers by sending many angels to my life and making countless miracles happen. With the efforts of HA health professionals and everyone who was touched by the determination of my mom, I am not only able to reach my 25, but also to study at HKU, establish reliable personal relationships, develop interests of Japanese culture and language and many more… despite the fact that I have spent my first 17 years of life in hospital.

Even though we stayed hopeful and tried very hard to live the fullest as much as possible, SMA was progressive in reality. I gradually lost the abilities to write, grip, swallow my saliva and even take a normal breath as I get older and older every day. The BIGGEST PRESENT not only for me but for the entire SMA community around the world, however, has emerged – SPINRAZA! As I have gone through the frustrating journey of deterioration, such gift is too heavy to deserve that I must save the children first by any means. I am deeply thankful for the efforts of all rounds of people and grant me opportunities to witness the reborn of our children in Hong Kong and being one of those fortunate; I am now able to eat the dishes my mom prepared, study like any normal university students, learn foreign languages and pursue my dream of being an author. All these are ordinary activities yet never expected for SMA individuals. I am very happy we can stay healthy and create the future together.

I have my own limitations; I am just an ordinary person, yet extraordinarily blessed.

Other Patient Sharing

The Hong Kong Society of Neuromuscular Diseases