Here, gratis of my friend and fellow sibling survivor, Heidi Horsley, is a clip from
another video you must see. It’s called “Darius Goes West,” and it tells the story of 15-year-old Darius Weems, who was born with Duchenne’s Muscular Dystrophy, a progressive and uniformly fatal form of Muscular Dystrophy--the most common genetic killer of children in the world.
What’s the sibling link? In 1999, DMD killed Darius’s beloved older brother, Mario, 19. He has seen the ultimate course of his disease up close and personal, and lost the person who best understands what his life is like.
What’s the movie about? Facing death, embracing life. Darius, who is from Athens, Georgia, had never been across the state line. So a bunch of his friends rented a wheelchair friendly RV—Darius lost the use of his legs shortly after his brother died—and asked Darius where he wanted to go. His answer: West. So they took off, and they documented the trip.
Their ultimate goal, L.A., where they hoped to convince the powers that be at MTV’s Pimp My Ride to customize Darius’s wheelchair. I don’t know if they achieved this goal or not—I’ve got to order the DVD—but I know I’ve got to see this movie. And I believe Darius and his buddies have a new project going now—selling the DVDs of “Darius Goes West.”
Cost: $19.99. Every $17 goes to DMD research. Darius and his buddies are hoping to sell one million DVDs by September 27, 2009—Darius’s 19th birthday—and finance another movie, too.
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