Parents Of Oklahoma Baby Born With Butterfly-Thin Skin Hope For Cure
SAPULPA, Oklahoma - An Oklahoma baby was born with butterfly-thin skin. It's a rare disease that one in 50,000 people are born with.
At just nine months old, Gunner King is all too familiar with pain.
"He was missing skin on his right cheek, a couple of scratch places on his face. His hands, wrist, his feet were completely bare, no skin, at all, and his ankles, as well," said Gunner's mother, Emily King.
Gunner was born with a rare skin disease called Epidermolysis Bullosa, or EB.
He's missing the protein that binds his top layers of skin with his bottom layers.
The slightest touch or friction can cause blisters that are equivalent to second degree burns.
"Currently, the only treatment we can do is preventative wrapping and treating infections and lancing the blisters with needles," Emily said.
The King family has a closet full of bandages for Gunner.
His parents, Emily and Cody, have to change the wrappings at least once a day.
With visible marks all over his body, Emily said it hurts when people stare at her "butterfly-skin prince."
"It's horrible. Right now, Gunner doesn't know that they're staring, but eventually people are going to still stare when he gets older, and I think, all the time in my mind, what's the best thing to say to him when he does grow up about why people are staring at him," Emily said.
She said a simple 20-minute trip to the store can cause her baby a tremendous amount of pain.
"The back of his neck started sweating and, sure enough, all he was doing was playing and looking around out the car and it tore his neck," Emily said.
Cody has a message for anyone who has kids: "Don't take for granted what you do have. I never thought this would happen to me. One in 50,000—that won't happen to me. But it can."
If the King family decides to have another child, that boy or girl has a 25% chance of also having EB.
Emily and Cody plan to have a genetics test done before they decide to have another child.
The King family said doctors in Minnesota are searching for a cure.
If you'd like to know more about this rare disease, visit PuckFund.org.