Every mom I know in the Duchenne muscular dystrophy (DMD) community has a diagnosis story. When I meet a DMD mama, we often share those stories; it’s a way we get to know each other. Part of my diagnosis tale, for example, is that after my three sons were diagnosed, the neurologist told us to take them home and love them. Then when they turned 6, the neurologist said, we could start them on steroids.
My sons’ diagnoses began when my oldest, Max, was 4. No one had to tell me to take my boys home and love them; I’d do that regardless. But I knew nothing else. I’d never heard of Duchenne before the day they said it’s what my sons were living with. Therefore, I had no idea what to do next. Waiting two more years until Max turned 6 didn’t work for me.