I am often asked, “What is Duchenne Muscular Dystrophy (DMD)?” I have answered this question for family, friends, and even strangers. My answer often sounds like a script I’ve memorized. According to the MDA, “Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.”
Last week, Danny Boy asked me, “Momma what is DMD?” I didn’t have a script for that moment. I spoke so fast I don’t even remember the explanation I gave him.
Danny not only has DMD, but he has an esophageal cleft, glass bones, a suppressed immune system, and an enlarged aorta. That’s a lot of big words to try and explain to a pint-sized little boy!
Most children fear monsters under their bed. Danny boy only fears his cough assist machine that hides under the bed until it’s needed again.
If you asked Danny to tell you what Duchenne Muscular Dystrophy (DMD) is he would tell you that it’s what makes him fall, what keeps him from running, and is what makes it difficult for him to sit up and play. He may tell you it’s why he asked his mommy to wear pj’s all day because he can’t undo the button or unzip his jeans. He would most definitely tell you it’s what makes him wake up at night with cramps in his legs and upper arms. He would show you his G-Tube and tell you stories of how much he dislikes being hooked up to his feeding machine. He may even mention the many fractures including two major fractures in his femur before he was 3. Danny Boy would go on with the list of medications he takes and the doctor appointments he goes to each month.
So what do you do when you have Duchenne’s? Well, if you’re Danny Boy you live life to the fullest! You don’t take any moment or achievement for granted. You look around you and discover there is a community of people who want to invest in your life. Organizations such as, Make a Wish, groups fighting for a cure (such as Parent Project), and of course the thousands of individuals who take the time to write, pray, and encourage you.
Danny boy is grateful for the love others show him. It sure is a lot more fun to focus on who people are instead of what a disease is, wouldn’t you agree?
Danny Boy’s Mom