Man with spinal muscular atrophy discusses desire for genetic cure
A man born in 1981 with spinal muscular atrophy describes his childhood struggles and current thoughts on genetic treatments.
Early life and diagnosis
The individual was born in 1981 and began stumbling as a young child. At age three, doctors diagnosed him with a form of spinal muscular atrophy linked to a recessive gene. His muscles weakened progressively over time until he required a wheelchair by age eight.
Impact on daily living
By the time he reached 18, he rarely walked outdoors without assistance. He maintained aspirations similar to his nondisabled friends but lived in fear of future decline. The condition prevented his muscles from keeping pace with his growing body.
Hope for medical advances
Medical genetics became more precise during the 1990s as the human genome was mapped. The man noted that understanding genetic conditions improved every year. This progress created a faint possibility of treatment beyond his current limitations.
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