At the Nashville Kids’ Triathlon on Saturday, 9-year-old Lexi Clark was aiming for more than a medal. By training and competing, she is trying to slow the progression of a fatal disease that affects both her and her brother — GAN, or giant axonal neuropathy.
The odds of being affected are tiny: only about 50 kids in the world have it. For a family to have two kids with GAN is even less likely, according to Lexi’s mother, Lagenia Clark.
“My husband and I literally had a larger chance of winning a multimillion-dollar lottery than of meeting up and both having this rare recessive gene,” she said.
But they did, and now Lexi and her brother Justin, 13, are both fighting the progressive nerve disorder. According to the National Institute of Neurological Disorders and Stroke, few kids afflicted with GAN make it to young adulthood. Difficulty in walking usually shows up before age 5. Symptoms later extend to a lack of feeling in limbs and a slowing down of mental processes. Lexi and Justin have been luckier than most so far.
“Right now Lexi is not affected outwardly, but tests show she already has neuropathy in one leg and foot,” Clark said. “Her brother [Justin] didn’t have trouble walking until he was 11.”
Because GAN is so rare, researchers haven’t solidified a cure yet, Clark said.
“Right now there is no treatment,” she said. “There is a potential cure and we’re waiting for approval by the FDA to inject the first human patient.”
So while most of the 750 kids in the Nashville Kids’ Triathlon this year competed for fun, Lexi Clark entered on a mission. Her mother says she plans to race as long as she can. Justin’s fraternal twin brother Jared, who is unaffected by the disease, also races to raise funds and awareness for GAN.
Clark, whose family lives in Texas but who attended Vanderbilt University and helped organize the Nashville Kids’ Triathlon this year, says her kids have raised $150,000 for research, mostly through sponsorship for completing triathlons.
“If they can stay weight-bearing, then they can slow progression of the disease,” Clark said of her children, “so it’s important we keep [them] as active as possible.”
For more information about giant axonal neuropathy, visit Justinstriumph.org.