Darius Weems, star of Darius Goes West, participates in groundbreaking research for the fatal disease, Duchenne muscular dystrophy, which took the life of his brother at age 19.
Inside the F.M. Kirby Research Center for Functional Brain Imaging Kennedy Krieger Institute, 23-year-old Darius Weems— wearing a thick gold chain with a cross, jeans that sit low and bag around his calves, and a red St. Louis baseball cap—rolls into the waiting room in his wheelchair, accompanied by five friends. One of them repositions Darius’s foot after seeing it fall off the wheelchair’s footrest. A tech wheels a stretcher next to them, and the friends gather around, hoisting Darius onto it on the count of three. “Are you ready, Darius?” asks the tech. “I hope so,” he jokes, then flashes his infectious smile.
Darius travels to Kennedy Krieger several times a year along with his crew to participate in the research study, spending 30 to 40 minutes inside an MRI machine—a white tube that looks impossibly small for his body to fit— while techs capture video of his beating heart, looking for diminished scarring around his heart and improved “squeeze” of his heart muscle, signs that his heart function is improving.
There are few studies aimed at adults with muscular dystrophy. That’s because the lifespan for Duchenne averages only in the mid twenties, and there is no treatment or cure.
The signs of muscular dystrophy begin in childhood. Children begin progressing normally and learn to walk, but then start falling. They experience progressive weakness in their arms and legs, and stop walking around age 13. As they grow older, they have respiratory and cardiac problems, which eventually take their lives.
“Research in Duchenne muscular dystrophy is very much focused on keeping little kids walking,” explains Kathryn Wagner, MD, director of the Institute’s Center for Genetic Muscle Disorders. “Almost all clinical and research attention is on little kids. It’s almost as if once you stop walking, nobody sees you anymore.”
Dr. Wagner recalls attending a conference in which the president of Parent Project Muscular Dystrophy, the largest foundation for Duchenne, said to a packed room of 300 parents and only a handful of clinicians and researchers, “When are you going to run an adult clinical trial in muscular dystrophy?” It was a question Dr. Wagner couldn’t ignore. So she began to focus her research on treatments to prolong the lives of adults with Duchenne.
“I never thought there would be research on adults with Duchenne in my lifetime,” says Darius, who watched his own brother die from the same disease when he was just 19. “I feel happy to be a part of that and help move closer to a cure.”
Darius, who was the subject of the award-winning documentary, Darius Goes West,has become somewhat of a celebrity among young people, who connect with his message of living life to the fullest and celebrating differences. He encourages kids to "live like you are living," believing that "it shouldn't take knowing that you are dying in order for you to live.” He and his crew travel the country as part of what they call the “Believe Tour,” visiting schools and spreading awareness about disabilities. So far, they’ve raised over $2 million for muscular dystrophy research.
“What pulled me in was ‘believe’— that’s really what it’s all about,” says Moeid “Mo” Mohammad, a member of Darius’ crew. “He goes into schools and does shows, and when people see Darius they say, ‘You make me stronger. You make me a better person.’” At one school, a seven-year-old boy told Darius, “I’m so happy you came. You made my dream come true,” causing the young celebrity to tear up. At another school, a group of girls held up a sign that read, ‘Marry us, Darius!’
Darius seems to have a profound impact on young people, whether they have a disability or not. And he also has an impact on parents. “Darius gives parents and young people with Duchenne a huge amount of hope,” explains Dr. Wagner. “We want them to know the research community doesn’t give up on kids when they stop walking. There are many people like Darius who are successful in their lives despite tremendous disability.”
Darius is quite weak, and has limited hand and wrist function—enough to operate his wheelchair, but not much else. Fortunately, his facial muscles have not been affected, and he still has a great smile. And he can sing and rap, his newest passion. He recently signed a record contract with New South Entertainment and released three inspirational rap songs. It’s just the latest way of spreading his message.
“I try to inspire people with my rap. It’s about believing you can do anything.”
“Darius gives parents and young people with Duchenne a huge amount of hope. We want them to know the research community doesn’t give up on kids when they stop walking. There are many people like Darius who are successful in their lives despite tremendous disability.”
|Duchenne with a Future: The Power to Live features commentary by Dr. Wagner|