When 6-month-old Asher Camp was diagnosed with type 1 spinal muscular atrophy, a leading genetic cause of infant mortality, his family measured his life in days, not years. They dreaded the future, wondering how much time they would have with their beautiful baby boy.
Parents of children with type 1 spinal muscular atrophy aren’t guaranteed to see their baby’s first steps, first day at school, or other treasured milestones that make up a child’s life. Instead, they watch anxiously as developmental milestones are missed, as common colds require trips to the emergency room, and as hope fades for reaching the day when a cure becomes available.
