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Parents of NKY boy with rare skin condition working to raise funds, awareness

“This flipped our world upside down, but with family and friends, anything’s possible.”
Published: Sep. 8, 2021 at 10:54 PM EDT
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BURLINGTON, Ky. (WXIX) - The parents of a Burlington boy born with a rare skin condition are now devoted to helping find a cure.

According to Kelsey and Ben Studer, their son Boone was born with recessive dystrophic epidermolysis bullosa.

“He is lacking a protein in his skin called collagen 7 that binds his skins layers together, so any type of friction can cause blisters of shearing of the skin,” Kelsey said.

Boone’s diagnosis has hindered him from crawling and putting weight on his feet, and his parents said simply wearing certain kinds of clothing or being in hot weather is enough to irritate his fragile skin.

“It’s been hard. We’re trying to find creative ways to give him as normal of a life as we can,” Ben said.

Despite his condition, Ben and Kelsey say Boone is always laughing and smiling.

“We’re really proud of him. He’s, you wouldn’t be able to tell he’s got anything wrong with his skin,” Ben said.

At this point, Boone wears dressings on his arms and legs to protect him from infections. Kelsey and Ben said the hardest part is knowing that although clinical trials are underway, there is currently no cure for his condition.

That is why they have started a Facebook page called “Boone’s Butterfly Battle” and are planning a walk for him in the fall.

“The biggest thing in their way is funding, and I think we’re just ready to step up and do our part, do what we can, to help raise awareness and raise some money for these kids and adults to not have to suffer through this anymore,” Ben said.

Until a cure comes through, Kelsey and Ben are relying on community support to carry them through the tough times. First responders and law enforcement agencies such as the Boone County Sheriff’s Office already put together a parade for Boone’s first birthday in August.

The Studers said they do not know how Boone’s symptoms will develop in the future, so for now, they are taking things day by day. They said going through this with their son has taught them an important lesson.

“Life is precious, and it’s short. You don’t really know. Life can change at any time,” the couple said. “This flipped our world upside down, but with family and friends, anything’s possible, and I think if Boone could talk, he would just say just to be happy.”

As of now, Boone is going to physical therapy twice a week to help him develop.

The Facebook page for Boone is called “Boone’s Butterfly Battle” because children born with Boone’s condition are often called “butterfly children” since their skin is so fragile, like a butterfly wing.

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