I’ll be honest, up until around ten years ago, I didn’t know much about Muscular Dystrophy. About all I knew was that on Labor Day, Jerry Lewis held an MDA telethon that tore at my heart. Still, I didn’t really understand or connect with it.
Until my nephew was diagnosed with, specifically, Duchenne Muscular Dystrophy.
My nephew turns 13 in a little over a month, and he’s doing well, beating the odds of most kids his age with DMD. And for that fact, everyone close to him is very thankful. He’s smart, handsome and a total joy.
He plays in junior high band. He’s a saxophone player… I think he knows girls find that hawt. (Don’t we.) He consistently amazes me the things he’s interested in and has taught me. I get him a Guinness Book of World Records every Christmas. I like to call it “our thing.”
He has a very distinct knowledge of right and wrong, and more than once I’ve found him to be the voice of my own conscience! He’s working his way towards becoming an Eagle Scout, and he loves cars and trucks. His dad works at a Ford dealership and is a certified mechanic; I think that’s a big part of where that love of cars comes from.
If it wasn’t for the fact that he’s stout and his calf muscles are bigger than most kids. If it wasn’t for the fact that he can’t run or be in any sports. If it wasn’t for the fact that when going a longer distance, he is in a wheel chair, you’d never know there was something wrong.
You’d never know he is dealing with things most people will never have to acknowledge.
What is muscular dystrophy?
First and foremost, muscular dystrophy is a genetic disorder. You can’t catch it from someone. Its not contagious. It’s something you are born with due to basic issues in the individuals genes. These issues weaken the body’s muscles, muscles that we all know from basic science courses make the body move. This weakening continues on as the individual ages, which is why some cases aren’t diagnosed until adulthood.
There are many different types of muscular dystrophy, separated by their rate of deterioration or perhaps by the muscles it attacks.
How many people have it?
According to a report in June 2005 by the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, “Duchenne and Becker muscular dystrophy, alone affect approximately 1 in every 3,500 to 5,000 boys, or between 400 and 600 live male births each year in the United States.” [National Institute of Neurological Disorders and Stroke]
Is it fatal?
Sadly, yes, it can be fatal. Remember the heart is a muscle. Muscular dystrophy can affect the heart, lungs, etc. and eventually it can claim the individual’s life. (This is the part I can’t dwell on, because it rips my heart out. I think that goes for all of the family.)
What can be done?
Every day research is being done to help combat muscular dystrophy. This research and the knowledge and drugs that have come from it are a big part of why my nephew is doing as well as he is. That along with sheer determination, an optimistic attitude, and absolutely amazing parents (and little sister!) that support him.
This research is a huge part of why the MDA Telethon is so very important. Every dollar helps move the research closer to a cure. Every dollar can help save a life. Every dollar brings hope to those who face muscular dystrophy every day.
So, what’s this Duchenne Muscular Dystrophy your nephew has?
I’ve recently discovered Parent Project MD, which focuses strictly on Duchenne Muscular Dystrophy. They’ve posted a video to YouTube explaining DMD wonderfully. It gives hope, but it also had me in tears at times. But, I want to share it here to educate.
Yes, its almost 10 minutes long, but it is worth it. I promise. Please take the time to watch and hopefully understand.
A few final thoughts: as many people go out on the lake or have a backyard barbecue, many others are relying on the Labor Day telethon to be a success. As you look away from the screen, not wanting to see a child in a wheelchair, families find joy in their child’s life, and they pray for a cure to keep that child living the best life they possibly can.
In our dismal economy, it seems like we’re all having our pocketbooks squeezed until they are dry. I know mine is… but even one dollar helps. It helps. It matters. I will happily give up a dinner out to see my nephew’s life made better. To see the lives of thousands of kids made better. They are all more than worth it.