Adaptive sports have been a huge thrill for homeschool senior Ben Lou of Poway. Lou was diagnosed with Spinal Muscular Atrophy (SMA) at age one. This rare genetic disease affects motor neurons in the spine, limiting his body’s strength and mobility. He uses an electric wheelchair to sit, stand and recline. Even with assistance, a task like eating lunch can take more than an hour. But that doesn’t mean sports are out of the question.
“I have SMA, and it’s going to affect me,” says Lou, “but I am going to find ways to minimize those effects. With an attitude of continuous, outside-the-box seeking of solutions, I can achieve my dreams.”
One of those dreams is recreational surfing. Each summer, Lou participates in an adaptive surf program hosted by Cure SMA and Ionis Pharmaceuticals—the company that developed the world’s first SMA treatment. In order to catch a wave, Lou is strapped onto an adaptive surfboard that allows him to lie securely on his back. Helpers hoist him out above the water on their shoulders. When the perfect wave appears, one volunteer grabs the back of the board and paddles like mad until they catch it. Lou describes the experience as “truly amazing.” He went out six times on his very first trip!
The program Lou participates in is called Surf Away SMA with Ricochet (the surf dog). Keep an eye out for future events at www.CureSMA.org.
Winter sports are another exciting possibility for kids with limited mobility. With help from the United States Adaptive Recreation Center (USARC), Lou was able to enjoy a family ski trip in Big Bear. He used a bi-ski—an adaptive chair with two skis underneath. An instructor held on at the back to control speed and steer while Lou experienced the incomparable rush of racing down snowy slopes.
“The concept of skiing seemed totally out of the question for someone with my weakness,” says Lou, “but there I was, reveling at the mountain of snow, nervously and giddily looking down from the lift, and soaring down the slopes. It was a surreal experience.”
To reserve an adapted ski lesson, which includes adaptive rental equipment for any body type, visit www.usarc.org/winter.
Lou has compared living with SMA to driving on wheels that will pop on anything but the smoothest of roads. “With some luck and focus, I can still be among the first to arrive at grand destinations, as too many others spend their lives on autopilot,” he says. “Sometimes though, I dream about the speeds I could achieve with better tires.”
To learn more about Ben Lou’s accomplishments and advocacy efforts, read the 2021 edition of Flourishing Families (coming soon), where he is featured on the cover, or access the publication at www.SNRFSD.org.
Anne Malinoski is a contributing writer and mother of two boys. He older brother has special needs