It's a rare condition that affects a child with it every moment of every day. So far, there's no cure.
In many ways Caden Phipps is like any other six year old. He sure likes video games.
"He's a normal six year old with lots of energy and I wish I had about 10% of that energy. But he's just a rambunctious six year old," his mother Connie Phipps said.
The Jefferson County woman remembers when Caden was born he seemed perfectly healthy. But that changed in the first 24 hours.
"The variant that he has is Epidermolysis Bullosa Simplex Dowling-Meara," she explained.
That's EB for short. It's a connective tissue disease that makes skin super fragile.
"They call them Butterfly Children because their skin is so delicate like a little butterfly," she said.
Photos document the first few weeks of his life when he was a little baby covered in blisters and sores. Early on someone saw Caden's sores and bandages and actually reported the family to child protective services.
"It looks like someone has probably scalded him with water. He has blisters that look like second and third degree burns," Connie said. "He's developed keloids on his feet. It's like a callous."
He started walking and talking at age three. That's something doctors doubted he would ever do.
"It was the most awesome thing ever because we never thought that he would because of the blisters on his foot. As his skin has matured his feet have gotten a little bit tougher," she said.
He's a tough little kid who rarely complains about the constant pain.
"There's pain management, there's skin management, and there's nutrition management. Nutrition is that we try to get as many calories as possible. Since the skin is the largest organ in his body his skin is always in a state of healing so we have to make sure we get the proper nutrients in his body," she explained. "There's no cure. There's not enough people who have EB."
He's on Tenncare but it doesn't cover everything. His treatment requires medical dressings like a burn patient would use and specialized ointment.
"His bandages run between $2000 to $3000 per month," she said.
Next week they'll go to the closest EB center in Cincinnati for three days of doctors appointments.
A fundraiser luncheon this Friday will help defray costs.
While there, the family will learn new bandaging techniques and wound care dressings and interact with other patients.
"I remember the first time I met a family that had a child with EB I was blown away. Because I was like I'm not alone. When I brought his home from the hospital I was all alone. I had nobody," she said.
They're building an informal support network for people like Caden, a butterfly child with delicate skin and a faithful family.
"I have God in my life. If I didn't have God I don't know what I would do."
The all-day luncheon this Friday starts at 10 o'clock at the New Market Community Center in New Market.