When you meet Darius Weems, who has Duchenne muscular dystrophy, you quickly learn that the most important thing to remember about Darius is not his DMD but how he is living.
Darius is a 17-year-old with all the interests of a typical teenager: video games, sports and girls. Two years ago, he had never traveled far from his home of Athens, Ga. In fact, he had never been outside the state's borders until he and a group of friends decided the time had come to see the USA. So with a wheelchair-accessible RV, 11 friends and a supply of film and audio equipment, Darius embarked on a 7,000-mile journey across the country.
The result was the documentary “Darius Goes West.” It was also much more.
The friends hit the road in the summer of 2005, headed for Los Angeles with the goal of getting Darius' wheelchair customized by MTV's “Pimp My Ride.” But between Athens and L.A. was an entire country to explore.
“It was something I'll never forget. We saw so many incredible things and met so many great people,” said Darius. “Las Vegas was really something. I'd never seen anything like that before. Plus I won $60,” he said. “And then there was the Grand Canyon. You see that on TV sometimes, but when you're there in person and you can see how deep it is, and how far it goes, that's a whole different thing.”
According to filmmaker Logan Smalley, the documentary is also designed to educate people about DMD. Instead of feeling sorry for Darius because he is terminally ill — 100 percent of DMD patients, predominantly boys, lose mobility by their early teens, and the disease is always fatal — Logan believes viewers share the excitement as Darius discovers America.
Darius met Logan, now a 24-year-old Harvard grad student, 10 years ago when Logan was a teen volunteer at a camp for children with special needs. The two have been friends ever since.
“He's been an important person in my life,” said Darius of Logan. “He believes anything is possible and is always encouraging me at everything.”
While the makeover for his Pride Mobility Jazzy 1170 didn't go exactly as planned, Darius said the trip was far more about the journey than about the destination. “The time we spent together, the things we did, the way we all got to be so close, that was the big thing,” he said.
As for his wheelchair, “the Jazzy has been good for me. It's been a lot of places with me, and I've always been able to count on it,” Darius said. On their trip, the group saw firsthand the difficulties that impede wheelchair users, but also some ways in which institutions are adapting to provide access to all Americans.
The friends' adventure has garnered its share of accolades. “Darius Goes West” has won 20 awards, including the Audience Choice Award at film festivals in Santa Barbara and Palm Springs, Calif.; Oxford, Miss.; Dallas; Atlanta; and Boston.
All profits from “Darius Goes West” are being donated to Charley's Fund, an organization that supports DMD research. (Darius watched his older brother Mario pass away from the disease at age 19.)
Logan has also received a grant to launch a “Darius Goes West” school program this fall. A DVD will be packaged along with lesson plans. The hope is that students who see the film will be encouraged to organize fundraisers for DMD research.
According to the film's press brief: “We know — and Darius knows — that DMD won't be cured in his lifetime. Nevertheless, Darius took a road trip to raise awareness of his disease in hopes of benefitting those with DMD who follow in his footsteps — and to prove that he has no limits, even for those in a wheelchair.”
To read more of Darius' story, visit www.pridemobility.com. For more information about the film, visit www.dariusgoeswest.com. For information about Charley's Fund, visit www.charleysfund.com. And for information on DMD, visit www.mda.org.
