Living and Dying With Muscular Dystrophy

Feb. 16, 2007 — -- It felt like I was interviewing my brother. The shape of his head and torso were identical. The chubby cheeks and sneaky smile were the same. And the endless attempts to shift his bulbous arms and get comfortable in his wheelchair were an exact replica of Tommy.

But this wasn't my brother. Tommy sadly passed away in January 1991. This was Darius Weems, from Athens, Ga., and this is what Duchenne muscular dystrophy, or DMD, does to the body.

I met Darius at the Santa Barbara Film Festival, when I attended the world premiere of his remarkable documentary, "Darius Goes West."

The film tells the story of his first-ever trip beyond the boundaries of his hometown. He and a team of friends/helpers rent an RV and drive from Georgia to California. Their intention is to visit West Coast Customs, the company featured in MTV's "Pimp My Ride," in the hope that Darius' wheelchair would be tricked out just like the cars on his favorite show. In the process, they raise awareness about a condition that remains the single biggest genetic killer of children on the planet.

The documentary records a journey that is full of happiness and heartbreak.

To learn more about Darius and also the fight against muscular dystrophy, please visit www.dariusgoeswest.com by clicking HERE.

Darius, who'd never previously seen the ocean, is carried out of his wheelchair on one occasion and helped to stand in the sea. The miracle of being upright again is not lost on him or his friends, and Darius bursts into uncontrollable laughter as the waters crash against his skin.

And then there are times when he can't get into a roadside gas station because there is no access for his wheelchair. He repeatedly crashes his wheelchair into the curbside, but to no avail. His frustration is loud and deep.

It was impossible to watch the film without seeing my brother in every frame.

He too was born with DMD in 1962 -- 13 months before my birthday. It's a genetic disease that, according to the National Institutes of Health Web site, affects around one in every 3,500 male births worldwide -- almost solely boys -- and is characterized by rapidly worsening muscle weakness in the legs and pelvis, and eventually affects the whole body. When Tommy was Darius' current age, 17, he too appeared to possess the body of an over-eager bodybuilder. All his muscles were bulging -- and completely useless.

It is a cruel condition in that sufferers begin their lives like any other child -- walking, talking and in the case of Darius, shooting hoops. But then, from the age of 5 or 6, they begin to slow down.

When Tommy was about 7, I began to realize that stealing his toys or beating him in races was getting easier. At the time, I had no idea that his spirit was willing but his flesh was weakening. I still bitterly regret those moments of sibling rivalry because he stood no chance of winning against his younger brother.

By the age of 10, Tommy and Darius both required walkers. Within two years they would become reliant upon their wheelchairs. Their similarities are just as consistent for almost every child with the disease. And the final reality is that the majority die by the age of 25.

But now, for the first time since the disease was described by French neurologist Guillaume Duchenne during the 1860s, scientists are inching closer to a major breakthrough -- even a cure.