HEBRON, Ky. — Boone Studer is 2 years old. He was born with Epidermolysis Bullosa, or EB. It’s a rare genetic connective tissue disorder. 

“It makes Boone’s skin extremely fragile and blisters and shears off. It effects the outside and inside — his mouth, esophagus, internal organs,” Ben Studer, his father, said.

This is something that debra of America reports nearly 200 children in the United States are born with each year. Many variations of EB exist, making Boone pretty rare. Studer says the goal is to try and give Boone as normal a life as possible, but there are challenges this family tackles daily.

“Bath times are pretty painful for him and we have to change the bandages almost daily and it’s a pretty brutal experience for him. He’s been on meds his entire life,” he said.

There is no treatment or cure, yet at least, for Boone and others battling EB. Studer said each year now, his family and others gather to walk for a cure for EB. It’s a chance to raise awareness on this lifestyle of Boone’s, but also to fundraise for the debra organization working to help those like Boone and their families.

“Really helps supply those important medical supplies to those families whose insurance won’t necessarily cover it and just kind of helps take some of the burden of this disease off their back and they fund research for treatments and cures as well,” Studer said.

He said it’s an amazing experience seeing community members gather each year for them in the northern Kentucky region.

“Every time it takes your breath away how much people care and how much they want to come out and support. It just means a lot to us to know that people do care, even when they don’t have to and they choose to,” Studer said.

But he knows not everyone has such a support system, and that’s why they want to continue fundraising efforts each year for the debra organization, to help others in need.