SMA Care

Affan 5 years old | SMA type 1

Affan 5 years old | SMA type 1

I am Affan and I am 5 years old. Other children my age have already started walking and some can even run very fast. But not me. Why? When I was 9 months old, my parents were shocked by a diagnosis of Spinal Muscular Atrophy, type 1. This disease weakens my muscles because of the loss of motor neuron cells, which are special nerve cells that control the body’s muscles. The doctors also informed my parents that the life expectancy of a baby like me is usually only up to 2 years. This news was heartbreaking for my parents. However, miracles happen to those who do not give up. At the age of 1 year and 10 months, I was selected for the MAPs (Managed Access Program) to receive treatment. The treatment is very expensive. Although it does not cure, it greatly helps to maintain the strength of my muscles. Look at me now! I have grown up healthy and happy to nearly 5 years old! In my spare time, my hobbies are playing jigsaw puzzles, writing, coloring, and reading storybooks. I really hope that this SMA disease will not take away all the hobbies I can do now. Please share my story so that me and my friends who have SMA can continue to receive treatment so that we can enjoy what we love doing.
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