SMA: A Father’s Story

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by Wendy Henderson |

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Spinal muscular atrophy (SMA) is a genetic disease that affects an estimated one in 10,000 children. The severe muscle wasting disease affects the child’s mobility. As SMA progresses, and depending on the type category, the child’s muscle loss leads to inability to walk, sit unaided, swallow, and in very severe cases, even breathe.

Meet the Kingsley family and 6-year-old Brett who was diagnosed with spinal muscular atrophy (SMA) type 1 when he was just a baby.

In this very honest and moving video from the DNA Learning Center shared in July 2012, we meet James Frey.  James’ son Leo was born with type 0 spinal muscular atrophy. Unable to move from the head down, Leo lived only 11 days.

Read more about the different types of SMA here.


SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.