More than Duchenne
Duchenne Muscular Dystrophy. A disease of muscle degeneration, fragile bones, respiration insufficiency, a weak heart, and numerous secondary complications to just about anything. It’s a disease full of emergency cards, dietary concerns, mental health concerns, meds, meds, and more meds. That’s the story in the medical world. But there’s more to the story. Much more.
At home, DMD isn’t only – or even mostly – about the medical equipment, the home modifications, or the accessible vehicles. Even discussing and validating the heavy grief of parents and family doesn’t really touch the core of DMD. At home, all this medical – stuff – is really just details.
At home, Duchenne Muscular Dystrophy is about connecting with the person inside that weakening body and cultivating their self-worth.
It’s about pushing back against stereotypes. It’s about validating humanity and battling cultural norms to clear a path for them to exist as competent, fulfilled human beings. It’s about educating society about the beauty and worth in individuals with disabilities so that when an amazing human blooms despite his or her frail body, there will be someone there to love them, to be their partner and to explore life with them as an equal.
Yes, DMD is a fatal muscle wasting disease. But at its core, Duchenne Muscular Dystrophy is really about living a life – a life in its fullest form with immeasurable opportunities.