Sarah Ford | November 4, 2014

‘Hope for Baby Easton’ meet a 12-year old with the same skin disease

By Michael Benny

Many of you have been following the story of Easton Friedel of Weedsport since he was born two summers ago. Easton lives with a rare, painful genetic skin disease called Epidermolysis Bullosa, EB for short. Because the disease is so rare, we have not been able to introduce you to another child with it, until now.

Recently in New York City, Easton’s parents Danielle and Jared were honored by an organization called DEBRA. The Dystrophic Epidermolysis Bullosa Research Association of America is the only national organization raising money to fund a cure for EB. The Friedel’s were honored with the DEBRA Awareness Award for bringing new attention to the disease.

At the fundraiser we met Robbie Twible, 12, of Long Island. Robbie also has EB. “It’s sometimes painful, especially at night,” Robbie says when asked how he describes his condition to other people. “It is mostly my legs, sometimes my toes, and also my hands,” Robbie explained when asked where the pain is the most critical.

“Robbie was an emergency C-section,” his mother Kathleen Twible said. “When he was out they said he had some skin missing from his leg, then they took the baby away and I didn’t see him, normally you get the baby, and in this case he was just gone,” Twible said. It would be hours before she was able to see her newborn baby boy. “Hours later they tried to use tape to on his belly, and when it didn’t work it ripped off and more skin came off of him,” she recalled, adding: “My family went home and started to clear out the apartment because we didn’t think there was going to be a baby to take home.”

Many children born with EB don’t survive the first year. 

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