Darius O. Weems

by: Logan Smalley

Three hundred yards of sand separate Darius Weems and his wheelchair from the Pacific Ocean. We are with him — 11 friends holding two video cameras and a bedsheet we found in the back of our RV. Three thousand miles from home, we lay the bedsheet flat on the ground and turn on the cameras.

Darius has no idea the next moment in his life will one day be seen and celebrated by millions of people. He doesn’t know the moment will become the climax of his documentary, “Darius Goes West,” which will go on to win more than 25 film festival awards. He doesn’t know the moment will eventually be shared on CNN, “Nightline,” “Today,” “Good Morning America,” MTV, Netflix, the TED Talks stage, and the Ellen DeGeneres show.

It’s a moment that will become a symbol of progress in the disability rights movement, and a beacon of hope for the millions of families affected by his fatal disease, Duchenne muscular dystrophy. Within a decade, Darius will leverage the moment to raise $2.5 million for DMD research, a significant portion of which will help fund research that leads to the first ever FDA-approved treatment for DMD.

Darius doesn’t know that any of this will happen, for no moment in Darius’s life will ever feel like it’s guaranteed. In the summer of 2005, 15-year-old Darius knows only that 300 yards of sand that separate him from his ultimate destination — the Pacific Ocean. And two weeks prior to reaching this distant shoreline, he had never left home.

Darius O’Brian Weems, known to loved ones as “Big Daddy” or “D,” was born in Athens on Sept. 27, 1989. On Oct. 9, 2016, at age 27, he passed peacefully at Piedmont Athens Regional Medical Center due to DMD-related cardiopulmonary failure. Darius is survived by his beautiful sister, Maroneisha Robinson, his loving father, Frank Weems, and up until his last year of life, he was blessed to be raised and cared for by his strong and beloved mother, Lisa “Jamie” Robinson. Jamie, who was so proud of her son’s accomplishments, passed away on Sept. 29, 2015. In the wake of Darius’ mother’s death, Maroneisha became his primary caretaker and closest friend.

Growing up, the siblings often shared stories of their eldest brother, Mario Robinson, a wise soul who somehow seemed to know his rascally little brother was capable of inspiring millions of people around the world. Mario, who was also born with DMD, passed away in 2001, at age 19, and it was his dying wish that motivated Darius’s westerly ambitions. Before passing, Mario asked the “Darius Goes West crew” — at the time, just Darius and Mario’s camp counselors — to help his little brother explore the world beyond their hometown.

Long before hitting the road, Darius tested the patience of his saintly teachers and nurses at Oglethorpe Elementary School, Burney Harris-Lyons Middle School and Cedar Shoals and Clarke Central high schools. Darius had achieved national notoriety by his sophomore year, but no experience triggered as much pride as his high school graduation ceremony. His name was called, “Pomp and Circumstance” played, and as he rolled across the stage his peers surprised him with a sustained standing ovation.

It was always his peers who Darius hoped to inspire most. Young people are the demographic that lives and dies with DMD, and to Darius, they represented the generation that would one day cure this devastating disease. Darius met tens of thousands of teenagers on his 300,000-mile, three-year journey. When his health declined, and he lost the ability to travel, he continued engaging hundreds of students per week online. Using Skype, Darius inspired class after class with screenings of his film, impromptu rap performances and the retelling of stories he’d collected from “the big fat road.”

Here’s the ending to one of those stories, and the moment that countless more stories began: Three hundred yards of sand separate Darius and his wheelchair from the Pacific Ocean. We lay the bedsheet flat on the ground and turn on the cameras. We count off, lift, and gently place all 300 pounds of Darius “Big Daddy” Weems onto the sheet. Dangling from the bottom of the makeshift hammock, his ashen foot points due west. His Cheshire cat grin emboldens us for the trudge. He can’t know it will one day embolden millions. Can he? As recorded in his feature-length documentary, “Darius Goes West,” here’s what our beloved Darius Weems said about the first rogue wave washing over his legs.

“I was smiling that day and I’m gonna be smiling when I leave. ‘Cause when I die, folks ain’t gonna say, ‘Darius gone’ ... they gonna say, ‘Darius gone West.’”

In lieu of flowers, donations can be made to www.dariusgoeswest.org or www.charleysfund.org.

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