Nov. 22, 2012— -- Darius Weems is on a mission, but even though he is only 23 years old, it's a race against time.
Darius, an aspiring rapper and star of the documentary, "Darius Goes West," suffers from Duchenne Muscular Dystrophy, a rare genetic disorder that results in the disintegration of muscle tissue. Legs and arms are seized, and eventually, so are the muscles that surround the heart. In the United States, the majority of people afflicted with this disease die by age 25.
For Darius, the disease has been a slow but steady progression. He could walk when he was little, but was then diagnosed with DMD around age 5. By age 9, Darius transitioned to a walker and then to a wheelchair at age 12, where he has remained for the past 11 years. Today, he can only wiggle his fingers and feet, but there is so much more he wants to do, like make music and find a cure for the disease that took his brother at age 19.
"In my situation, I would say I'm blessed," he said. "I can still brush my teeth and stuff."
He knows there may well be a day when he can't, but Darius said he doesn't see life like that.
In addition to raising money for DMD research, Darius is also a research subject. A patient at the Kennedy Krieger Institute in Baltimore, Darius is taking part in a clinical trial, designed to help cure the disease.
"As long as I'm here and being able to motivate people and being strong for them, hey, I'm living my life to the fullest," he said.
His hope is placed squarely on a clinical trial being run by Dr. Kathryn Wagner and Dr. Daniel Judge. The Kennedy Krieger Institute research team has collaborated with the Division of Cardiology in the Johns Hopkins University School of Medicine, to discover whether sildenafil, the active ingredient in Viagra, will help stimulate deteriorating muscles, especially around the hearts of Duchenne patients.
When faced with his odds of survival, Darius admitted he feels down sometimes, but that he is trying to live one day at a time.
"Just because I have a fatal disease doesn't mean any doctor can put any amount of time on my life," he said. "But you know, I think about the situation that is at hand, trying to cure this disease and trying to carry on my brother's legacy, and you know losing him kind of made me want to get out here and show people how fatal this disease is and how big of a problem it is."
We first met Darius back in 2007 when then-"Nightline" anchor Martin Bashir spent some time with 17-year-old Darius. Bashir had a particular interest in Darius' story because his own brother had died of DMD.
At age 15, Darius had taken an extraordinary journey across the United States in a van built to accommodate his wheelchair.
"I'm in a wheelchair but I'm just like a regular person," he said in 2005. "Never think I'm like somebody else. I'm just the same as other people. I've got talents."
The idea to travel across the country was Logan Smalley's. Logan had been a counselor at a camp where he had met Darius' brother, Mario. When Mario was dying he asked Logan to keep an eye on Darius. Logan promised he would and he took that promise seriously.