Danielle and Jared Friedel with their son Easton who suffers from a skin condition called Epidermolysis Bullosa
WEEDSPORT -- Easton Friedel was born in August of 2012. By that time, his parents had every reason to believe it was the end of a normal pregnancy. There had been no warning signs that anything would be so horribly wrong.
The first indication that Danielle Friedel had that something was wrong was after her delivery.
"The midwife stepped aside, and I saw the look on my husband's face and he said, 'What's wrong with him?'" Danielle told CNY Central’s Michael Benny.
Easton was born with skin missing from some areas and blisters in other areas.
Jared Friedel, Danielle's husband and Easton's father, says he reached for his cellphone and searched "missing skin at birth." The first page to come up was information on the worst disease you've never heard of - Epidermolysis Bullosa or EB.
Watch a Stanford University doctor talk about the tremendous pain children with EB go through everyday.
As of this writing, Easton is five months old and taking care of him is more than a full time job. The bandages that keep his arms and legs protected from further damage must be changed every other day. It is a process that can take up to two hours including preparation time, a bath, and the changing of the dressings.
Easton can not be held in the way a mother is naturally drawn to hold her child.
"He hates it," Danielle says. "You have to be careful that whatever you are doing, you are not doing more damage to his skin. I can count on one hand the number of times I've ever held him. One time I fell asleep next to him lying on the floor, and that was about as close as I can get like that, you just do what you can do."
Easton is on pain medication around the clock. If he were not, the pain of his skin condition would be unbearable.
Epidermolysis Bullosa is a genetic disease, but there was no known history of it in either Danielle or Jared's families. The couple has three other sons and they do not have EB.
There is no cure for the disease, and because it turns up in about 1 in every 50,000 live births, there is little incentive for major medical corporations to invest in researching a cure; however, there is research being done, and there are several ways you can help Easton, his family, and other children and families enduring the disease.
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.
Visit Easton's YouTube page for videos made by his family and the Support Baby Easton Friedel Facebook page which is updated by his family.
Watch more videos of Baby Easton here.
