A Life with Duchenne Muscular Dystrophy

By MaLea Berry, Paxton Swisher, and Kathy Garner
M&M TIPsters

Judging by the look on his face, it is apparent that Darius Weems does not let his disability get in his way. Even in the face of the number one genetic killer of kids, this 20-year-old Georgian still lives his life to the fullest. Darius has Duchenne Muscular Dystrophy, or DMD. To the amazement of those watching, however, Darius--who had never left Athens before--went on a cross-country quest with eleven of his best friends to get his wheelchair pimped on MTV’s "Pimp My Ride." A documentary was made about the trip and the movie was dubbed “Darius Goes West.” The main purpose of this trip, however, was to raise awareness about DMD.

According to Medline Plus, symptoms of the disease usually focus on the loss and degeneration of muscle function. Those diagnosed usually lose the ability to walk by age 12. However, immobility such as bed rest is not recommended, as it can make the disease worse. Other symptoms include an abnormal heart muscle (known formally as cardiomyopathy), enlarged calf muscles that are eventually replaced by fat and connective tissue (known formally as psuedohypertrophy), deformities of the chest or back such as scoliosis, and respiratory disorders such as pneumonia in later stages of DMD. Less common, but still present in some cases, are varying degrees of mental retardation, congestive heart failure, and irregular heart rhythms (arrhythmias). There is no known cure, but gene therapy may become available in the future.

There's more to Duchenne Muscular Dystrophy than just the physical component. Yes, you lose your ability to pick up your favorite toys, or hold your new puppy, or even turn a doorknob by yourself, but there's also an emotional aspect of the disorder that makes the life of a person with DMD much more complicated. Imagine having your mind set on doing an action as simple as grasping something with your hand and picking it up. Now imagine the frustration that would rise up through you if you couldn't get your hand to clamp your fingers on it.

In the documentary Darius Goes West, Darius tries to hold the phone up to his ear while talking to his mom, but when it falls to the floor, he can't bend down to get it and has to ask his friend to do it for him. When he goes to take a drink, he holds the glass in his mouth and has to 'throw em back' in order to drink it. Even then Darius remains upbeat.

“It really didn’t get me down,” he said. “I felt like I couldn’t let it beat me down or I could just live. I felt like just living with it and not thinking about the bad parts of it would help me get through everyday life.”

Anna, a blogger in an anonymous DMD support group on Experience Project, explained in a blog post about having Duchenne, "The biggest way the DMD has affected my life is my relationships with others. It has made me not very confident and afraid of what people will think of me if they found out I have DMD.”

Dealing with the disorder causes people to have to grow up just as rapidly as their disorder attacks them, and life becomes more precious when you know you don't have a good chance of living for long. The average life expectancy for a person with DMD is somewhere between their late teens/early 20s to around age 30.

Some people, though, don't let their disorder dictate what they do with their life. Josh Winheld, author of Worth the Ride, was diagnosed at age 4 and by the age of 10 he was wheelchair bound. In his book, he wrote, “I believe society often underestimates the complexity of living with a disability-the joys, the challenges, the ordinary, the extraordinary..." and went on to explain how he wanted to thank his family and friends for helping him without rendering him useless.

Anna, who experienced the rarity of being diagnosed as an adolescent, said that she looks to God for guidance and strength. She may not have much in her arms and legs, but "the strength of her faith" she said, really helps her get through her bad days, when she feels afraid of "not being able to have any independence".

Kathy Garner, 15, is a sophomore at Ursuline Academy in Dallas, Texas.
Paxton Swisher, 15 years old, is a sophomore at Parish Episcopal School in Dallas, Texas.
MaLea Berry, 15, is a sophomore at Paideia School in Atlanta, Georgia