The young athlete hopes to raise money and awareness for Giant Axonal Neuropathy research, a disease that affects his family.
The young athlete hopes to raise money and awareness for Giant Axonal Neuropathy research.
Like many triathletes participating in this weekend’s Oil Man Texas triathlon, Jared Clark will rely the support of his friends and family to get through the 70.3 mile race. Unlike his fellow competitors, however, Jared will require support to get to the race–the 12-year-old athlete will be counting on his parents, David and Lagenia Clark, for a ride.
“When Jared was seven years old, a neighbor told him about the Kiwanis Kids Triathlon,” recalls Lagenia. “He raced the last race of the summer, then returned the next summer to do five more kids’ races.”
At age nine, Jared was participating in adult sprint triathlons with his aunt, Melissa Leccesese, and looking to develop his skills further. After receiving the approval of the family pediatrician, Jared began training before and after school with Rice Aquatics and OnUrLeft, an adult triathlon team practicing near his home in Bellaire, Texas.
“The year Jared turned 10, he saved his birthday and Christmas money to buy a trainer. He read in the USA Triathlon magazine about the Youth Skills Camp, and asked for permission to attend, even though he wasn’t old enough. They allowed him to go, and he has attended for three of the last four years. For his 11th birthday, he asked to attend the Houston Triathlon Summit with Andy Potts. He was the youngest participant by a few decades.”
Jared has encouraged his peers to join him in the sport, starting a triathlon team at his elementary school to prepare for the annual Houston Kids Triathlon. Jared’s family, too, have joined in, with mom, dad, twin brother Justin and eight-year-old sister Lexi participating in the sport.
Though a long course race was on the horizon for the young athlete (“his goal was to complete a half-iron distance before he becomes a teenager in December,” says Lagenia), the effort took on a new meaning when his twin brother, Justin, was diagnosed with Giant Axonal Neuropathy (GAN). Last week, his sister was diagnosed with GAN as well.
The disease, a recessively inherited condition resulting in progressive nerve death, generally appears in early childhood. Signs initially appear in the form of difficulty walking, progressing into a loss of sensation and coordination in the limbs. As the disorder progresses, patients become quadriplegic, becoming dependent on feeding tubes and ventilators before dying in young adulthood.
Jared is using his race on Nov. 3 to raise money for Hannah’s Hope Fund, a non-profit organization which funds research efforts for GAN. The Clark family has created a website, Justin’s Triumph, where supporters can make tax-deductible contributions to Hannah’s Hope based on the number of miles Jared will be racing.
“Jared’s endurance and love for this sport is enabling us to reach out and make others aware of this fatal disease,” says Lagenia. “Hopefully this increased awareness will bring in some big donations to help find a cure for GAN.”
Though Jared is happy to use his triathlon efforts to bring awareness of the disease affecting his family, the 12-year-old is quite shy about being in the limelight. While he is confident about his ability to do the race, he’s nervous about the attention at the finish line. To ease the burden, he plans to share the spotlight with his brother, Justin, during the run through the finsher’s chute.
“I’m most excited about finishing,” says Jared, “because a lot of people from my neighborhood and school will be there cheering for both Justin and me as we cross the finish line together.”