rarerelated tag: SMA Type 1 (Infantile SMA or Werdnig-Hoffmann Disease)

Alex says her daughter made it to Norton Children’s Hospital where she was diagnosed with spinal muscular atrophy (SMA). “Riley had developed this knot on the back of her head which I thought maybe was a tumor I had no idea it was SMA.” SMA is a disease that attacks the nervous system in the body and in most cases ends up fatal. Riley’s was diagnosed early and although treatment options were limited Riley had a breakthrough. 

“They (Norton) came back to us and said Hey there is this new treatment that has just been FDA approved and it wasn’t even a question,” said Haas “Anything that could possibly help her what we knew about SMA was that at 4 months old she should have only regressed and never progressed.” Riley underwent multiple treatments of care for SMA and neurologist Arpita Lakohtia says she has even surprised the staff.