A Personal Story of Adult Life with SMA

Steve talks about life with mild SMA, from high school, to college, to his law career.

One of the greatest dreams of my life was being able to go to a college that was not tailored to a wheelchair student. I wanted to get into the best university that I could because as most children with SMA, if not all SMA children, we are extremely bright. It’s one of the great ironies of this disease. Weak muscles, strong, very strong intellect. So I was the president of my prep school’s senior class. I had great grades. I had fairly competitive SAT scores and I was accepted at Duke University. I was the first freshman in a wheelchair ever accepted at Duke in 1974. People with disabilities, especially with spinal muscular atrophy, we have to devise ways of adapting for our needs and if something did not work, then we would devise a way that could work. You have to be imaginative. You have to be creative and you cannot take no for an answer. The bar exam was first of all extremely, extremely pressurized. This is my ticket to practice law and if you don’t pass the exam, then you don’t get to practice that and so the first day was a multiple choice exam and I was given extra time to write at the – I wrote 30 essays or 24 essays and I wrote for eight hours a day for three days. And so as a result of that, I really never, I never wrote again. It was as if I had written all I could write for the bar examination.

Spinal muscular atrophy, SMA, RNA, mRNA, splicing, gene, genetic, DNA, antisense, motor neuron, splice, Law school, career, work, college, high school, Duke, wheelchair, university, intellect, freshman, adapt, bar exam, CPAP, respiratory, pneumonia, choke, pace

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