Taking steps towards a cure for DMD
By LINDSAY LARIN
Bellevue Reporter Former Staff Writer
March 6, 2009 · Updated 10:35 AM
Taking a break from running the halls of Sammamish High School in a game of catch-me-if-you-can, five-year-old Aiden Leffler climbs on the lap of his new friend Darius Weems. The two would seem to have little in common. Weems grew up in Athens, Ga., carries a large bear-like frame, and has 14 years on young Aiden. Weems also spends his days in a wheelchair. However, the two share a bond many will never understand.
Both Weems and Aiden live with Duchenne Muscular Dystrophy (DMD), the number one fatal genetic disease to affect children in the world.
The two also share a positive outlook on life, evident in their bright smiles and contagious laughter.
This past week, Sammamish High School in Bellevue welcomed Darius Weems and his crew of friends and filmmakers to present their multi-award-winning documentary, Darius Goes West. The event marked the kick-off for the school's 4th annual Run/Walk for Aidan, a 5k run organized by students to raise funds for Charleys Fund, a nonprofit dedicated to finding a cure for DMD.
The 2009 Walk for Aiden event will take place on May 16.
Students at Sammamish High School quickly rallied behind their teacher, Mitch, and his family when they first learned of their son, Aiden's diagnosis four years ago.
Duchenne is a genetic disease which causes boys to gradually lose control of their muscles, eventually causing paralysis. Most boys who are diagnosed with DMD do not live past their early 20s. The Lefflers hope to find a cure in time.
Proceeds from the Walk for Aiden event also will benefit the Aidan Leffler Trust Fund, which has helped the Leffler family with the cost of medical treatments to allow Aidan to live the most comfortable life possible. In the future, the Trust Fund will help with the cost associated with possible house renovations to make it wheelchair accessible. If a cure is not found in the near future, Aiden like Weems, will require the use of a wheelchair as the disease progresses.
Four years ago, 15-year-old Weems and 11 of his best friends set off across America with the ultimate goal of getting his wheelchair customized on MTV’s Pimp My Ride. The result was a documentary film, capturing the hilarious, yet real moments that made up their journey across the country.
Weems and his friends initially hoped to raise $70,000 for DMD research. To date, Darius Goes West has raised $1.5 million for Duchenne research.
This year, the foundation launched the “One Year … One Million DVDs” campaign, devoting $17 of every DVD sale to promising DMD research. Weems and his friends have set out once again to travel the country and share their story in schools, businesses and with local communities. At age 19, the same age that his older brother, Mario, died of DMD, Weems has decided to focus on the celebration of his life and spreading awareness about DMD in honor of his brother.
To launch this year's Walk for Aiden, Sammamish High School students watched a screening of Darius Goes West followed by a question and answer period with Weems and the film crew. Black and white shirts filled the theater audience as student volunteers proudly wore their Darius Goes West T-shirts hoping to get the word out about the disease and the upcoming Walk for Aiden.
Last year, more than 1,500 people turned out for the Walk for Aidan event and raised more than $40,000.
Lindsay Larin can be reached at 425.453.4602.
For more information visit www.dariusgoeswest.org. Donations can be made at www.charleysfund.org to help find a cure for DMD.