On any given afternoon in Oklahoma, you can expect to find two-year-old Kashton busy doing the things he loves most: zooming around on a golf cart, roughhousing, or visiting with his family. To anyone watching, he looks like a happy toddler brimming with energy. But behind his adventurous spirit is a story of strength and bravery that began before his first birthday.
After two relatives were diagnosed with MPS, Kashton’s parents, Jacobe and Delanie, decided to have him screened for the disease as a precaution. To their shock, the results in April 2024 revealed that Kashton, just 18 months old, had Hunter Syndrome (MPS II)—a rare genetic condition affecting only about 500 boys in the United States.
“It has brought challenges none of us ever expected,” Delanie said. “Every week, Kashton takes a four-hour drive to undergo three hours of treatment at Saint Francis Children’s Hospital in Tulsa, Oklahoma. It’s not easy for him, but the strength and bravery he shows through it all is nothing short of amazing.”
Kashton began treatment quickly, and Jacobe and Delanie recall that the early days were overwhelming. During treatments, with an IV and splint restricting his tiny wrist, Kashton was unable to do much throughout the three-hour process.
“He couldn’t even bend his wrist because of the splint,” Jacobe recalled. “Trying to keep him still was so hard—he just wanted to play.”
While a port in Kashton’s chest has made the treatments easier, the anxiety of treatment remains. “He gets nervous every time,” Jacobe shared. “But with his iPad and our support, he pushes through. He’s tougher than we could have ever imagined—maybe a little too tough at times.”
Kashton has already endured multiple surgeries, including the removal of his tonsils and adenoids and his port placement. Through it all, his spirit shines. “He’s resilient,” Jacobe said. “Even after a tough surgery or when he takes a tumble, he bounces back so quickly.”
Outside of the hospital, Kashton is very much a typical toddler. He loves Mickey Mouse and Danny Go, and he never misses a chance to climb, run, or play outside. At the center of Kashton’s world, though, is his family. His paternal grandparents, Mark and Christina, are deeply involved in his life, often taking him to treatments, family outings, and even the most recent National MPS Society conference. His great-grandmother, “Granny,” holds a special place in his heart, too.
“He loves spending time with Granny,” Jacobe said. “When Granny is in the room, the rest of us might as well be invisible.”
Balancing Kashton’s care with work and school has been a challenge for his parents. Delanie is studying sonography while working evenings as a cocktail server, and Jacobe spends his days building jet engines.
“It’s not easy,” Jacobe admitted. “But we’ve learned to lean on family, and Kashton has so many people who love him.”
The family’s first support event in Frisco, Texas, was a turning point. They met Dr. Munzer, a renowned leader in MPS research, and connected with other families facing similar journeys to theirs.
“Meeting Dr. Munzer and hearing him explain the syndromes and treatments was eye-opening,” Jacobe said. “It helped us understand what we were facing.”
That understanding gave Jacobe and Delanie something even more important—hope. And with that hope comes a vision for Kashton’s future. “I want him to experience a childhood like other kids—running, playing sports, making friends,” Jacobe said. “Right now, he’s progressing well, and I think he’ll be able to do sports for a while. We just want him to have those moments.”
Kashton will turn three in November. His story is one of strength and determination—but in every laugh, every milestone, and every small victory, Kashton’s family sees a future filled with possibility. Kashton’s journey is still being written, but with his family by his side, it is one defined not only by rare challenges, but by strength, hope, and love.
