By CRISTINA JANNEY
Hays Post
Twenty-month-old Kelton Wolf is known as one of the butterfly children.
He was born with a rare skin condition that makes his skin as delicate as a butterflies wings.
Kelton is unable to make a protein that helps keep skin together. Nicole Wolf, Kelton's mother, explained it's as if Kelton is missing the glue he needs for strong skin.
"It's called the worst disorder you've never heard of because it is very rare," Kelton's mother, Nicole Wolf, said.
Kelton's mother and father of Quinter both have a recessive gene for epidermolysis bullosa, which is also know as EB. Neither parent were aware they carried the gene. Neither family was aware of anyone in their families having the disorder.
Kelton's older sister, Adaline, 4, is healthy, but she also carries one of the recessive genes.
There is no cure for the disease. Kelton will have the disorder for the rest of his life. It will not likely get better, but get worse, his mother said.
Kelton's skin is so fragile even the rubbing of his clothes against his skin can cause sores and blisters. He wears clothes made of 100 percent cotton or silk, which is softer on his skin.
He wears dressings on his body, arms and legs to protect his fragile skin.
"If you see us in public, don't be afraid to ask," Nicole said. "I get a lot of looks. Normally [people ask], 'What happened?' 'Was he in a fire or a car crash?' I have also had a few who asked me what I did to him."
She said she would rather people ask so she can spread awareness of EB. About one in every 20,000 babies are born with the disorder. Kelton's disease is considered to be severe.
Kelton's condition also affects him internally. Some children who have EB have so many sores in their mouth, they can't eat. Kelton has also had issues with his throat tightening.
Kelton receives supplemental nutrition, because he can't keep up with the calories needed to heal his wounds.
Nicole started to cry softly as she talked about caring for her son.
"It's very hard on our family," she said. "Every day is a blessing for us because we never know that is going to be the day God calls him home."
Nicole said she knows that her son is in pain and struggles. He receives pain and anxiety medication during his regular dressing changes.
The family has been especially concerned since the emergence of COVID-19. Kelton's lungs and immune system have been compromised by the EB. COVID-19 could be fatal, Nicole said.
Nicole said her daughter has learned great compassion and gentleness in dealing with her younger brother.
"My daughter is amazing with him," she said. "You have to be super careful with him — kind of act like he is wrapped in Syran Wrap."
However, like delicate Monarch butterflies that fly hundreds of miles even with torn and battered wings, Kelton is also beating the odds.
Many children, who have EB never learn to walk, in part because of the wounds they develop on their feet.
Thanks to physical therapy, Kelton has learned to walk with the help of a walker.
"I am a very religious woman, so I thank God. We've prayed that he would be able to walk because we were told he probably wouldn't," Nicole said.
She also thanks Theraplay Learning Center in Hays, which has helped Kelton get to where he is today.
Despite his struggles, Nicole said Kelton is a happy little boy. Whether its eating ice cream, vanilla dripping off his chin, or feeling the soft feathers of a baby chick.
"If you ever meet Kelton, he is the happiest guy you will ever meet," his mother said. "He has bright blue eyes and a cute little smile. You would never guess what he goes through in a day."
Kelton has extensive medical bills. The Wolfs have insurance, but some costs are not covered, such as travel expenses to a special EB clinic in Denver every three months.
His family has organized a softball tournament and raffle to defray some of Kelton's medical costs.
The softball tournament, which is scheduled for 8 a.m. Aug. 29 in WaKeeney, has reached its 10-team limit for this year. However, organizers are taking donations for a raffle that will be conducted in conjunction with the tournament.
You can contact Nicole at 785-299-0096 or her sister, Tabby Ummel, 785-731-1039. Both sisters are in Hays once a week and would be happy to pick up raffle items or donations.
The raffle already includes coolers and Fort Hays State University corn hole boards. You can check out the raffle items and keep up with Kelton's journey on the Keeping Kelton Strong Facebook page. Tickets for the large item raffle will be $5 each or five tickets for $20. Tickets for the smaller raffle items are $1 each or six for $5.
The family is also selling T-shirts to raise funds. Those can also be found on the Facebook page.
Kelton has a nonprofit bank account set up in his name for use for his medical expenses. Proceeds from the tournament and the raffle will go there. If money raised exceeds Kelton's needs, the Wolfs plan to make a gift to the EB clinic, where Kelton is treated, to help other families who have children with EB.