Duchenne. It’s a bitch. And today my complaints are not because I have 2 kids that can’t walk, 5 wheelchairs in my house, an elevator in the middle of my house, a commode in my living room, a rolling cart of medical devices, etc.

Today it’s about the behavioral complexities that come with Duchenne. I don’t want to speak for my kids but I can imagine that living a life with a disease that slowly takes away your ability to move and independence must be hard. But what is rarely talked about is all the behavior things that come with this muscle disease. And we experience it first hand, day after day, minute after minute, two times over.

Duchenne has always been tagged as a muscle disease, but we have amazing people in this field doing incredible work on how the lack of dystrophin also affects the brain. We continue to learn but what we know is that behavioral involvement varies. It depends on the kiddo, it depends on the mutation, it depends on the environment, and it depends on the medicine they are on. But many kids with Duchenne struggle with behavioral issues, and mine are no exception.