Luke’s Story

LukeI was born on August 11, 1995 at 12:04 in the morning. Obviously I don’t remember much of the details, but I do know that I was induced two weeks early because of low amniotic fluid. Eventually at about 6 months of age, my parents started worrying about my health because I was missing milestones. I was having trouble lifting my head and supporting my own weight.

After a whole bunch of tests and a muscle biopsy when I was one (still have the scar) I was finally diagnosed with Muscular Dystrophy, and then it was narrowed down to an unknown CMD. When I was very young around age 3 and 4, I had numerous pneumonias from reflux and had quite a few stays in the hospital. As I recovered, I was greatly changed (understandably so). I was much thinner and my appetite was decreasing. I was given an ng tube in my nose. Thankfully that was removed in a few months, but the doctors then gave me a g-tube in my stomach for extra nutrition. I also had a fundoplication to stop me from refluxing which helped me a lot. To this day I still have trouble trying different foods and gaining weight but I do okay as long as there is PB&J around.

Over the years, my mom had been searching the Internet for diseases that matched my numerous symptoms, as well as groups for parents of children with CMD. Finally, my mom stumbled across something about Ullrich Congenital Muscular Dystrophy and was struck by the similarities between me and many of the indicators. Another mom on the internet referred her to Dr. Bonnemann at CHOP. I had my first appointment with him when I was about 8 and he confirmed the diagnosis.

I don’t remember ever walking, although I’m told that I did. My first chair was a small one that I had for three years from kindergarten through second grade. Then I was also using a stander (AHH! – hated that) and a walker that was not very successful. I got my second power wheelchair, appropriately named Deuce, in the third grade. It was a most dutiful chair and served me well for five years. It’s out of commission now but the dirt remains caked on as a tribute.

My contractures have gotten worse over the years (hips, elbows, hamstrings, etc…), and it is scary to deal with that sometimes. I worry incessantly over these and then worry about worrying. And the cycle begins, leading to many an existential meltdown while stretching at night. My parents stretch me regularly which I hate but I know it is necessary.

I also have been doing swim therapy weekly for 8 years and I am able to walk in the water which is good. I really love hockey and play on a wheelchair hockey team based out of Philadelphia. We went to our first tournament this summer in North Carolina. (I had one goal). You can learn more about our team and Powerhockey at www.philadelphiapowerplay.com/ I am now fourteen years old, and am beginning high school.

I am taking all honors courses and an elective in TV Sports Broadcasting and Public Speaking because I like to talk. A lot. I consider myself very funny and always enjoy a good laugh. I also like watching and discussing all the Philadelphia sports teams. I have a younger brother Christian who does not have UCMD and a very cool dog named Bear.

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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