Clayton Richeson. Son. Grandson. Oldest brother of three. Multi-sport athlete. Fifth grader who loves science, Legos, and fun on a trampoline.
The list could go on, but one thing that is just part of his story – not his headline – is that Clayton is an 11-year-old with a rare genetic disorder. The disorder is so rare, it is simply known by its affected gene, RNU4ATAC.
The genetic variation seems to mainly affects Clayton’s vision, bone growth and immune system.
In his short life, Clayton has already had 8 surgeries. Dr. Patrick Riley Sr. a pediatric orthopedic surgeon, has performed several surgeries to straighten Clayton’s knees, and he is likely to need more as he grows. Ankle surgery may also be needed.
And yet, Clayton is the first to say “sign me up” for basketball, baseball, golf, swimming – you name it.
“Clayton is such a hard-working, determined and brave boy who faces every challenge head on,” says his mother, Kellyn. “Whenever he has a hard time or faces a challenge, he will tell me he isn’t going to give up, and he is going to be brave – and he is.”
One day Clayton brought home a flyer about a runner’s club starting for fifth and six graders – he’s a fifth grader in Minerva Local Schools – to introduce them to cross country.
“I was shocked he wanted to do it [given his leg surgeries],” said Kellyn, “and then I said, “Okay, let’s do it. The races were one mile and not easy for him. But he loved it. He ran hard. He finished in 9 minutes, 30 seconds and my mom was crying and I was crying. He pushed through and didn’t care that he got almost last place. He was just happy that he finished.”
Clayton was born full-term but spent a few weeks in Akron Children’s NICU. Early on there were concerns here and there. His growth was off. His teeth were smaller than what is typical. He had a delay with expressive language. Around age 3, their doctor recommended an x-ray of his bones, which revealed Clayton was two years behind in his bone growth. He was referred to Orthopedics and Genetics for further evaluation and testing.
He got his official diagnosis at age 5 following genetic testing.
Having a diagnosis, in this case, doesn’t help the family much, other than to know it falls under the umbrella of skeletal dysplasia.
There’s very little research and only a handful of families in the country who have shared experiences. It’s mostly a matter of expecting new things to come up and address them as they do.
“Our goal is to keep his legs from getting excessively bowed or knock-kneed during growth and that has required a few procedures so far and will probably require a few more,” Dr. Riley said. “Fortunately, he is a real trooper and I credit him and his family and how well they handle things.”
Kellyn and Troy, Clayton’s father, have had conversations with him about his need for frequently medical interventions.
“We talk about how sometimes things are harder for some people more than others and you just have to push through,” Kellyn said. “And he does. He faces every challenge thrown his way. Our family values are faith in God, and we tell Clayton that God is always there for him and he can turn to him in any challenging situation.”
Clayton just happened to land into a super athletic, competitive family. Grandpa Mark Murphy played football for the Green Bay Packers and was an was an assistant football coach at St. Vincent High School. His Uncle Mark played football in the Big Ten at Indiana University. Mom Kellyn and aunts Kara and Katie all played varsity basketball at St. Vincent, with Kellyn and Katie going on to play for Malone University and Kara playing for the University of Akron. Dad Troy played baseball for Malone and now is the head coach of the Minerva’s high school baseball and golf teams.
Aside from mom, Kellyn, and dad, Troy, Clayton’s two biggest fans are his younger brothers. Carson, 9, and Caleb, 7, keep Clayton challenged and on the move.
“When he ran that one-mile race, they followed him almost the whole way, cheering him on,” said Kellyn. “It was the cutest. They know things are harder for him but don’t take it easy on him either.”
Dr. Riley believes the family’s “underlying competitive spirit and toughness” achieved through years of sports, will serve them well and help them deal with whatever “challenges this disease throws at them.”
A few more surgeries may be in Clayton’s future but so will years of competitive fun, the rewards of team membership, the benefits of staying super active, and, most of all, the safe embrace of family who love him and support him in every way.