Saw Mattie Stepanek on Oprah, & I thought of the role of muscular dystrophy in That and a Token.
After I thought the novel should touch on disability in some way I decided to write about muscular dystrophy.
I definitely didn't want to write about the disease I have. I have to focus on that way more than I want to in real life! It had to be something else.
I had written that Segullah had 3 brothers who died before she was born and her parents moved from Uganda to the U.S. So I decided what they died of; something called Duchenne muscular dystrophy or DMD. It affects even the muscles that enable people to breathe & their hearts to beat. That's how most of the people who die of it die, especially in early childhood.
Mattie had something that sounds even more pervasive, affecting the mitochondia, which are like the power source for every cell.
Mattie and his mother both needed oxygen frequently. Seeing them I wondered if patients could live past early childhood with better medical care.
DMD usually only affects boys. Women are carriers who can pass the disease on to their children but usually don't have symptoms themselves. I'm not sure whether Segullah is going to have any symptoms herself. I'll figure it out when I get there.