Friends and family call him Super Asher.
Immediately after his birth, Asher was diagnosed with spinal muscular atrophy, or SMA. He has one of the most severe types of SMA, rendering him nearly completely dependent on a ventilator. He could not breathe or even sit up on his own.
Families dealing with SMA have had no treatment options – until recently. A new drug, Spinarza, was recently approved by the FDA to help treat this rare muscular disorder. Asher had his first infusion into his spinal column at St. Louis Children’s Hospital. After just a few days, his family started seeing improvements. He has continued to improve, now sits up on his own, and he goes for hours off of his ventilator.
His care team moved him to Ranken Jordan to take advantage of our Care Beyond the Bedside philosophy. Asher and family could socialize and play like other kids. His dad could bring him outside and play on the swings. Ranken Jordan gave his parents the confidence that they would eventually be able to provide his care independently at home.
After months of therapy and regular infusions of Spinarza, Asher is still making progress and is finally home with his adoring brothers after spending his first seven months of life inside a hospital.