An Adult's Reflection on the Progression of SMA as a Child

Steve reflects on the progression of his SMA when he was a child.

I could not raise my arms above my head. I would scoot on the ground in my early years instead of crawl and I would scoot along the ground. I could not turn from side to side. They would have to call my mother during the night and she would walk up 12 steps three or four times a night to turn me several times. There was an intercom in my room. I knew that I had to depend on my mother and father to get me up in the mornings, to put me to bed at night. When I needed to go to the bathroom, I needed to wait for someone to take me to the bathroom. I was able to feed myself at that point but it was increasingly, increasingly difficult. In fact, I can’t ever remember pushing my wheelchair manually for any length of time. By the time I was eight years old, I was placed in my first motorized wheelchair.

Spinal muscular atrophy, SMA, RNA, mRNA, splicing, gene, genetic, DNA, antisense, motor neuron, splice, neurodegenerative, complication, respiratory, skeletal, scoliosis, pneumonia, nutrition, pneumonia, surgery, curvature, brace, wheelchair, stamina

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