Easton Friedel turns two years old in August. His development has been significantly delayed because of his rare, incurable skin disease called Epidermolysis Bullosa, or EB. Now, after intense physical therapy, Easton is crawling, and his physical therapist says walking is the next goal. "We would work on one position for an entire session, like trying to sit up, or bending and trying to reach up with him over my leg," Melissa Stayton said. Stayton works with Cayuga County Early Intervention; she is Easton's physical therapist.
The progress is remarkable when you consider how Easton has spent a year and a half of his life: flat on his back. In fact, for more than 100 days, he was hospitalized with a life-threatening lung infection. His disease causes painful skin blisters, and the slightest touch would open up a new wound. Easton's skin is doing better now, but the disease is incurable. "That was a real challenge; he only knew life lying on his back. Many children who don't move for that long can develop a fear of moving, a fear of sitting, but Easton does not show much fear," Stayton said.
Our fist extensive visit with Easton, in February of 2013 produced this series of Emmy nominated documentary style reports which showed the heartbreak of his condition. Touching him was basically impossible. In fact, Easton's parents would only hold him when they had to change his bandages, or give him a bath to ease the pain of the blisters. Now his mother holds him regularly. "At night before he goes to bed I can grab him and hold him close and snuggle, and it is really incredible," said Danielle Friedel, Easton's mother.
The next major goal is walking. "I don't ever tell parents a child can't do something," Stayton said. "With Easton, there is no reason to believe that he can't and won't do a host of things related to development and that includes walking. Walking is something that I want to see him do in the next six months," she said. Stayton believes Easton may need special shoes to lessen the pain of the blisters on his feet. She does not believe his EB will stop his progress.
Easton's family encourages those who want to learn more about EB, and those who wish to donate to visit these websites: The Butterfly Fund, all proceeds go directly to family assistance; and the Dystrophic Epidermolysis Bullosa Research Association of America, a non-profit dedicated to funding EB research.