Dale was born in Gainesville, Florida. He grew up here with his brother Lee, and he’s the reason this site exists.
Dale has Duchenne muscular dystrophy. It’s a genetic disease: his body can’t make enough of a protein called dystrophin, which muscles need to stay healthy. Without it, his muscles are slowly damaged faster than they can repair. Duchenne is progressive, so it changes over time, and it touches almost every part of daily life.
How Duchenne affects Dale
Getting around
Duchenne weakens the big muscles first: hips, legs and shoulders. Over time walking gets harder and then isn’t possible, and a power wheelchair becomes how Dale gets everywhere. That means ramps instead of steps, wider doorways, and checking ahead whether a place is accessible before going.
It’s also why our family’s wheelchair-accessible minivan with a chair lift is such a big deal. It turns “it’s too hard to go” into “let’s go.”
Hands and arms
As Duchenne reaches the arms and hands, everyday things take more effort: lifting a cup, reaching across a desk, using a regular mouse and keyboard. Dale’s mind is as quick as ever, so the frustration is real. We’ve adapted his computer so it can be controlled remotely and with less effort, which keeps him connected to school, friends and games on his own terms.
Heart and lungs
The heart and the breathing muscles are muscles too, and Duchenne affects them. That’s the most serious part of the disease, and it’s why much of Dale’s care is regular checkups with heart and lung specialists, not just muscle doctors.
Everyday life
There are a lot of appointments. Plans need backup plans. Some days are tiring in ways that are hard to explain. But Dale still has strong opinions about everything, a sharp sense of humor, and a talent for winning arguments he has no business winning.
Why “Cure Dale’s Duchenne”?
Because a cure doesn’t exist yet, and it won’t happen by itself. It takes research, and research takes funding and attention. Duchenne is rare enough that most people have never heard of it, and common enough that it shouldn’t be invisible. Every person who learns about it, shows up, or gives makes a difference.