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Family, friends rally for CNY baby born with rare, painful skin disorder

A baby born at Auburn Memorial Hospital last week has extremely fragile skin that blisters with the slightest touch. It’s a rare disease known as Epidermolysis Bullosa, or EB, and it’s one of the most severe cases specialists at Crouse Hospital say they’ve ever seen in Central New York.
Auburn (WSYR-TV) -- A baby born at Auburn Memorial Hospital last week has extremely fragile skin that blisters with the slightest touch. It’s a rare disease known as Epidermolysis Bullosa, or EB, and it’s one of the most severe cases specialists at Crouse Hospital say they’ve ever seen in Central New York. Family and friends are now rallying to raise money for the supplies necessary to keep the baby alive.

Easton Friedel was born four days ago with marks that look like burns covering his arms, legs and back. Babies like Easton are called butterfly babies because they’re born with skin as delicate as a butterfly’s wings.

“If I were to rub his skin he would immediately start to blister and start to get red and get worse,” Easton’s mother Danielle Friedel told NewsChannel 9.

“He came out crying because he's in pain…you can't take him home, and you can't do the things you want to do as a mother because I can't take away his pain. I can't make him feel any better,” Danielle continued.

Easton’s tiny body will have to stay covered with bandages coated in Vaseline to prevent any friction and painful blistering. His parents use a Vaseline covered blanket when rocking him.

“They have Vaseline gauze in between each finger and each toe because they could start to fuse together,” Danielle said.

Easton won’t be able to use any hand-me-downs from his three brothers and may need a feeding tube to bypass sores in his mouth.

“Pain, he’s in pain. They try to keep him comfortable; he’s on Tylenol every six hours and when they do dressing changes he’s on morphine because it’s very painful,” Danielle said. “My hope is that someday they will find, with the research they’re doing, that they could find something to cure him, or at least take away a little bit of his pain.”

Doctors tell Easton’s family that most babies with EB die from infection before their first birthday. In Just three days, friends and family have raised more than $50,000 for the family. The money will go to a life-long need of bandages and supplies, specialists and donations for research.

To learn more and to donate, CLICK HERE.

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