A rare disease won’t keep this mother and daughter down: Spirit of Hong Kong
- 5 years ago
Most babies diagnosed with spinal muscular atrophy (SMA) do not live beyond the age of two. When May Chan was told by doctors that her three-month-old daughter Josy Chow had this rare genetic disease, it felt like the end of the world.But she never thought about giving up on her child.
Today, her daughter is 24 and a proud college student. The disease has left Chow almost completely paralyzed. She spent 17 years of her life in the ICU, and her health had been worsening day by day. But a new drug, Spinraza – the first and only treatment for SMA patients – was approved by the FDA two years ago, offering them a glimmer of hope.
It helps improve motor function and is among the most expensive drugs in the world. The mother and daughter are now on a quest to get the new drug for all SMA patients in Hong Kong.
The video is part of a series highlighting the finalists of the 2018 Spirit of Hong Kong Awards, which is organized by the South China Morning Post. The awards have been shining a light on Hong Kong's unsung heroes since 2013.
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Today, her daughter is 24 and a proud college student. The disease has left Chow almost completely paralyzed. She spent 17 years of her life in the ICU, and her health had been worsening day by day. But a new drug, Spinraza – the first and only treatment for SMA patients – was approved by the FDA two years ago, offering them a glimmer of hope.
It helps improve motor function and is among the most expensive drugs in the world. The mother and daughter are now on a quest to get the new drug for all SMA patients in Hong Kong.
The video is part of a series highlighting the finalists of the 2018 Spirit of Hong Kong Awards, which is organized by the South China Morning Post. The awards have been shining a light on Hong Kong's unsung heroes since 2013.
For more on the latest in China: https://www.inkstonenews.com/
Like Inkstone on Facebook: https://www.facebook.com/inkstonenews/
Follow Inkstone on Twitter: https://twitter.com/inkstonenews
Follow us on Instagram:https://www.instagram.com/inkstonenews