Activists say it's imperative to test if you are a carrier, as we mark Spinal Muscular Atrophy Awareness month

Photos: The Star/Izzrafiq Alias

On December 23 last year, Yap Sook Yee, 42 and her husband Edmund Lim, 43, received the best Christmas “gift” – news of a newly-approved drug which could treat spinal muscular atrophy (SMA). It brought them joy and hope for it could improve their son’s quality of life.

Their seven-year-old son, Branden, was diagnosed with SMA when he was a year old, and isn’t able to sit or stand without support. He needs constant care and a combination of physical and occupational therapies to help him maintain function and mobility as the disease progressively weakens him. He wears a brace to support his spine and goes on a Cough Assist Machine daily to help him expel phlegm from his chest as he isn’t strong enough to do it on his own.