3/12/24

Beck | Living with Duchenne Muscular Dystrophy

Beck enjoys piloting speedy vehicles in all sorts of conditions. He really loves his side-by-sides, a unique style of off-road racer. Earlier this spring we got a chance to see him drive down the trails near his home in rural Georgia. In this photo Beck's mix of toughness and defiance embodies the look of an off-road racer.


Behind him on the trail is his stepdad, Stanley, who helped adapt his side-by-side to make it easier to drive. “He used to only be riding for 10 minutes before his arms would start hurting him,” says Stanley. Stanley’s background in custom cars and motorcycles led him to a solution. “I found an electric power-steering kit,” he explains. He retrofitted the unit and now Beck is able to steer with much less muscular exertion.


When Stanley first met Beck’s mom, Brandi, she tried to warn him of what getting involved with her family would mean. The single-mom to three (Beck has two older sisters, and now, one younger) lived a tough life, working nights and weekends so she could get Beck to his doctors’ appointments throughout the week. As a test, she brought Stanley to an appointment, to make sure he understood what it meant to have a child with Duchenne, a terminal neuromuscular disorder.
Stanley met Beck and knew that he wanted to be a part of the family. Now, he has found his place among Beck’s sisters and Brandi. When Beck isn’t driving, he is practicing power wheelchair soccer, a sport he has gravitated toward in recent years, with his teammates from the Atlanta Sting Academy. Beck’s competitive spirit aids him as he fights against muscular decline. In this all-important race, patience and support are a must and his pit crew seems to only be growing in size and skill.

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Bouba | Heart Transplant Recipient and Global Community Organizer