by Sam Ray (Ally’s son), age 15 As a teen with facioscapulohumeral muscular dystrophy (FSHD), there are many things I wish I could do.
I have the infantile-onset form of the disease, which means I have experienced symptoms since birth. Infantile onset is more severe than the adult-onset form of FSHD.
While many people with the disease are able to walk and even run during their childhoods, I use a wheelchair and I am unable to raise my arms.
Read more on themighty.com