Written by: Ella J. Gehrke
For Kasen Cochran, a 17-year-old high school junior from Winterset Iowa, wrestling is not just a passion—it’s part of his identity. From earning a varsity spot as a freshman to competing at team state and nationals, Kasen is a gifted athlete.
Kasen also has Juvenile X-linked Retinoschisis (JXLR), a rare genetic eye condition that poses a constant threat to his vision. The condition causes cysts to form within his retina, disrupting the transmission of light signals to the brain and significantly impacting his sight.
Like many patients with rare health disorders, Kasen's road to diagnosis was not straightforward. It wasn’t until he was 12 years old and struggling to track flyballs on his baseball team that his parents realized something was amiss. “We wondered if he just needed glasses at that time and took him to an optometrist who thought he might have lazy eyes,” says Kasen’s dad, Brad Cochran. After a series of visits to optometrists and ophthalmologists, Kasen eventually received the diagnosis of JXLR, and was told of his increased risk of eye damage and the potential for partial or complete vision loss, even from mild eye trauma. This devastating news meant he would likely have to give up any sports where there’s potential to be hit in the eye. Juvenile X-linked retinoschisis is a challenging condition that currently does not have a known cure. Individuals with JXLR are often advised to take precautions such as avoiding contact and ball sports and wearing protective eyewear in high-risk settings.
At just 12 years old, Kasen had already developed a strong passion for competition, which made this news particularly difficult for him. “Up until this point, he was very chill about the diagnosis, but when he was told he had to give us sports, that’s when it really set in for him” says mom, Mindy Cochran, “we knew this would really change his life, because sports are what he loves most.”
Ultimately, the Cochran family was referred to Arlene V. Drack, MD, a pediatric ophthalmologist who specializes in genetic eye diseases at the University of Iowa, located two and a half hours away from the Cochran’s home. From the moment they met Dr. Drack, Kasen and his parents felt that his diagnosis wasn’t the end of his story. Dr. Drack quickly reassured them that Kasen's well-being was her top priority, and she was determined to help him find a way to continue pursuing his passions while safeguarding his eyesight. "She gave us hope," recalls Mindy.
Although a no cure for JXLR has been identified yet, Dr. Drack and her team are dedicated to several ongoing research efforts. When she is not in the clinic, Dr. Drack leads a laboratory on campus, conducting in-depth studies to expand what is known about this disease. The Drack Lab’s primary focus is gene therapy, with the aim of repairing the gene responsible for causing JXLR, along with exploring additional therapies that are specifically designed to benefit children, like Kasen.
After Kasen's diagnosis, his parents diligently searched for effective ways to safeguard his eyes from trauma. They exhaustively tried different types of athletic goggles, including mesh goggles, but none proved satisfactory. Some goggles were plagued by fogging issues, while others were easily dislodged during wrestling matches. However, a chance encounter with a fellow JXLR patient and wrestler from Michigan opened new possibilities. Mindy, Kasen's mother, reached out for advice and connected with the family from Michigan. It was here that they discovered a unique solution: women's lacrosse goggles. These goggles, now iconic in the Iowa wrestling community because of Kasen, fit snugly against Kasen's face without gaps and are secured in place with specialized wrestling headgear.
When Kasen first started wearing goggles at wrestling tournaments, he would often catch people looking at him and his goggles. But as he continued to excel in the sport, pictures of Kasen in his goggles started appearing throughout the wrestling community and he (and his signature goggles) began to gain notoriety. In the close-knit world of wrestling, goggles became synonymous with Kasen. Even when he competed out of state, people recognized him, and the questioning glances stopped. What was initially seen as a disability now simply represents Kasen and his abilities as a wrestler. The goggles have become a unique and integral part of his wrestling gear.
Throughout the wrestling season, Kasen's mom, Mindy, receives regular inquiries from other parents. On average, she is contacted at least once a week by parents of children who are curious about the goggles. They reach out seeking advice on how to protect their kids' eyes from potential injuries, so that they can continue to wrestle. It's not just parents of children with JXLR who approach her, but also those whose children have had previous eye injuries and are looking for ways to ensure their safety while participating in the sport.
Kasen's athletic talent and unwavering resilience have undoubtedly captured the attention of his wrestling community. Wrestlers, coaches, and fans alike have been inspired by his story, and now easily recognize him by the distinctive goggles. His unique journey has made him a standout figure in the wrestling community, drawing admiration for his wrestling talent as well as his determination and spirit.