Darius Weems

by Amanda Molinaro from Irvine

 (www.dariusgoeswest.org)
(www.dariusgoeswest.org)

At age fifteen, Darius Weems had never seen a range of mountains. He had never swum in the ocean, or even crossed a state line. Most of his life had been spent in a classroom or inside his house, confined to his wheelchair. Darius Weems has Duchenne Muscular Dystrophy, a degenerative disease that weakens the muscles and affects voluntary movement. By age 10, children are usually bound to a wheelchair, and the average life expectancy for someone living with Duchenne Muscular Dystrophy is early teens to mid thirties. It is the number one genetic killer of children worldwide, affects people regardless of race or gender, and has a 100% fatality rate. When Logan Smalley was thirteen he volunteered at Project REACH, a camp for kids with disabilities, where he met Darius and Darius's older brother Mario. Mario suffered the same disease as Darius, and when he was 19 he passed away. Before he passed away, he asked a favor of Smalley: to look after his brother Darius. Smalley, Darius, and some of the other counselors became fast friends, and after they graduated from high school they planned to take Darius on a trip. Smalley and 10 other friends were determined not to allow Darius’s quality of life to degenerate with his muscles.

Darius’s friends wanted to show him the world beyond his wheelchair, so they rented a wheelchair accessible RV, intending to travel from their hometown of Georgia to Los Angeles, touring the country. Logan Smalley decided to make a documentary of the trip and the four goals the 12 friends had in mind:

1. Introduce Darius to America, and America to Darius.
2. Raise awareness for Duchenne Muscular Dystrophy and bring attention to the nation’s caregiver crises.
3. Evaluate wheelchair accessibility across the country to see just how accessible America is.
4. Reach Los Angeles and ask MTV’s Pimp My Ride to customize Darius’s wheelchair on national television.

When Darius saw a mountain range for the first time, his face lit up with the infectious smile that his friends love most about him. His smile, full of hope, didn’t fade as Darius’s friends next took him to the ocean, where they gently lifted him out of his wheelchair and into the water for the first time. Darius next experienced a ride in a hot air balloon, and went rafting on a river with his friends.

 (www.dariusgoeswest.org)
(www.dariusgoeswest.org)

Everywhere they went, Logan Smalley, Darius Weems, and his friends handed out thousands of Who Will Care bracelets and teddy bears, promoting awareness about the caregiver crisis. In one of his speeches, Smalley stated that solving the caregiver crisis, and giving a “life without limits to people with disabilities” is what their trip is about. Along their trip, they held over a dozen press conferences to raise awareness about Duchenne Muscular Dystrophy and to raise funds to advance treatment and find a cure.

Along their trip Darius and his friends evaluated wheelchair accessibility across America, in an effort to ensure equal access to those with disabilities. The Americans With Disabilities Act came into being the same year that Darius Weems was born, and as Darius traveled from state to state he saw to the promise of that law: wheelchair accessible sidewalks, buildings, hotels, and restaurants. Despite the fact that the act had been in place for fifteen years, Darius and his friends knew it had a long way to go to fulfill its promise. They celebrated the fifteen year anniversary of the act in Carlsbad Caverns, New Mexico, which had wheelchair ramps that allowed Darius access. This and other events shown in the documentary emphasized the problem of wheelchair accessibility in America: “If a million year old cave can be wheelchair accessible, then you have to ask yourself why wasn’t the first gas station we stopped at.”

As they drew closer to Los Angeles, the site of Pimp My Ride, anticipation increased. However, when Smalley asked if MTV would pimp Darius’s wheelchair, they refused because they did not want to jeopardize Darius’s mobility. However, when they arrived back home they discovered that Full Effects (a company similar to West Coast Customs), had created a custom wheelchair with all the souped-up features Darius had asked for.

The documentary that Smalley made of their trip across the US, Darius Goes West, is a portrayal of courage in the face of uncertainty, and the bond of friendship. The documentary proves to its audience that “life, even when imperfect, is always worth the ride.” Smalley decided to self distribute the documentary, with 100% of the proceeds going to Charleysfund.org, an organization dedicated to fighting Duchenne Muscular Dystrophy. Smalley and his friends launched the “One Year…One Million DVDs” campaign with three goals in mind:

1) At least one million people would become aware of this disease
2) At least $17 million dollars would fund promising DMD research
3) Because DVDs don’t go bad, a part of our friend and hero, Darius Weems, will live forever.

They began to show the documentary at film festivals, and in each audience teachers and principals approached Darius and his friends, asking how they and their students could get involved in the Darius Goes West project. They created the Know About It! Program, where teachers can download curricula and lesson plans for their students. The lesson plans teach students about Duchenne Muscular Dystrophy and the research to find a cure, the Disability Rights Movement, and how to bring Darius to their school.

 (www.dariusgoeswest.org)
(www.dariusgoeswest.org)

Darius is now a full-time ambassador, working to educate people about Duchenne Muscular Dystrophy, accessibility issues across America, and the value of perseverance. Darius is turning nineteen this year, and he and his friends are celebrating his birthday by touring the country and doing their best to sell the DVD. The entire journey will be recorded, and if there is a story at the end of their DVD year, September 27, 2009, and they will make a second DVD. Darius Weems and Charley’s Fund need your help to continue their battle against Duchenne Muscular Dystrophy. You can show your support for Darius Weems by purchasing a copy of the DVD Darius Goes West. Visit the Darius Weems website to learn more about Darius Weems and his heroic fight struggle against Duchenne Muscular Dystrophy.

Page created on 4/8/2009 11:43:18 AM

Last edited 1/4/2017 11:40:39 PM

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