Disability Rights Activist Darius Weems Loses Battle with Duchenne Muscular Dystrophy

Darius was a rapper suffering from DMD and advocating for disability rights.

October 10, 2016, 6:06 PM

— -- Darius Weems, the inspiring rapper and dynamic disability rights advocate who suffered from Duchene muscular dystrophy, died Sunday afternoon of DMD-related complications, according to a statement put out by his organization. He was 27.

Weems is credited with raising awareness of DMD, a rare genetic disorder that results in the disintegration of muscle tissue. Over time, the disorder is debilitating. 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. His brother Mario died of DMD at the age of 19 in 1991.

“Shock. Grief. Helplessness. Those are the emotions we’re feeling -- emotions that all members of the DMD community feel too often and know too well,” reads the statement. “Joy. Camaraderie. Love. Those are the emotions he would want us to feel -- emotions that he embodied in his lifelong fight against DMD, and that he spread through countless individuals across the hundreds of thousands of miles of roads that he traveled.”

According to his organization's website, DariusGoesWest.org, he was checked into Athens Regional Medical Center on Friday morning with a persistent cough. His symptoms worsened rapidly, and he was soon transferred to the intensive care unit, where he passed “peacefully and painlessly” surrounded by family members and friends.

“Nightline” has profiled Darius extensively over the past decade, first in 2007 when his award-winning documentary, "Darius Goes West: The Roll of His Life," was released.

In 2012, "Nightline" followed Darius and his team of friends and fellow DMD awareness advocates on their "Darius Goes West" tour, where he traveled to schools around the country

"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 told "Nightline" in 2012.

When faced with his odds of survival, Darius admitted in that interview to feeling down at times, but that was 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."

Weems dedicated his life toward raising awareness of DMD, and two weeks before his 27th birthday, he learned that the Food and Drug Administration approved the first drug to treat patients suffering from DMD.

“He was just so happy to have lived to see that," said Logan Smalley, director of "Darius Goes West,” who last spoke to Darius on his birthday. "And this was on his birthday. My goal was to communicate to him that his birthday and all of the actions that he took in a very real significant sense, will provide more birthdays for so many others."

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