The joy of childbirth was shattered by the heartbreaking reality of indiscriminate genetics for the parents of baby Easton Friedel, born last week with a rare skin disease.
Easton arrived Aug. 23 at Auburn Community Hospital screaming in pain, to the dismay of his expectant parents, Danielle and Jared Friedel. His skin was raw and blistered, or missing entirely in areas where the slightest friction from his birth caused him severe injury.
Doctors at ACH were stymied by the condition and quickly transferred him to Crouse Hospital in Syracuse, where he was diagnosed with epidermolysis bullosa. The genetic disease, which affects one in every 50,000 births, causes a defect in the connective tissue of the skin and mucous membranes that makes the skin — including the interior surfaces of the mouth, stomach and esophagus — so fragile that touches, injuries or heat can cause blisters and/or detachment.
Babies born with EB, sometimes referred to as butterfly children because their skin is as delicate as butterfly wings, need constant attention and precise medical care. They live in constant danger of infection from open sores, and can suffer from blindness, swallowing and breathing difficulties, scarring and dehydration.
A large majority of children born with the most severe cases of EB don't live more than 12 months.
Easton will require a lifetime of care and expensive medical supplies. Currently, the cost of bandages to protect the baby's skin can cost as much as $10,000 per month, only about $1,500 of which is covered by the Friedels' insurance.
Jared Friedel is taking time off from his factory job, where he makes slightly more than minimum wage, to support his wife and their three other children, Logan, Carter and Blake.
He expects that the factory where he works will close within the year, and that he will be unemployed unless he transfers to Oklahoma.
To aid Easton and his family, an outpouring of support has emerged locally and on social media sites.
An indiegogo.com fundraising page has brought more than $50,000 in just a few days from more than 1,200 donors. Massive support has also arisen on Facebook for the baby and his parents.
Locally, a bake sale fundraiser will be held at Kinney Drugs on Owasco Street in Auburn this Friday and Saturday.
Heather Bserani, who taught Danielle Friedel when she was a student in Weedsport, plans to sell her homemade jewelry to support the family.
"We just want to get the word out to as many people as we can," Bserani said. "Everybody's heart just broke when we heard about the baby, so people came together and we're trying to do everything we can for Danni."
Staff writer Nathan Baker can be reached at 282-2238 or firstname.lastname@example.org. Follow him on Twitter @CitizenBaker.