Many children, like Baby Easton Friedel of Weedsport, don't make it through their first year. Baby Easton was born August 23, 2012 with a genetic skin disease called Epidermolysis Bullosa (EB) and has endured many hospitalizations, one of which lasted more than 100 days as he was treated for a potentially deadly lung infection.
Later this month, his family will celebrate his 1st birthday and they are inviting all of Easton's supporters to join them. "The one year mark is a major, major thing," Easton's mother Danielle Friedel says. "To have gotten to this point where he is stable and we are able to care for him at home, we didn't know at some points if we would ever get to this, or if he would make it," she said.
To celebrate Easton's birthday, his family is throwing a party, which is open to everyone. Eaton's family invites all those who attend to bring a bathing suit, towel and a dish to pass.
The event is August 18 from 11:00 a.m. to 4:00 p.m. at Seneca Lake State Park, 100 Waterloo Geneva Road, Geneva, NY 14456.
The park has a pavilion and is near a beach and a water spray park. Instead of bringing Easton a birthday gift, his family hopes you will consider donating to one of two charities that have helped them over the past year. I Refuse EB dedicated to raising awareness, being a voice for those affected, promoting advocacy and supporting research efforts. Debra is the only national non-profit dedicated to funding research and providing services and programs for those with EB.
Easton has grown a lot since CBS 5's Michael Benny brought you the "At home with Baby Easton" series of documentary style reporting on what it's like to care for a child with EB.
While he still has blistered skin, it is much improved. His parents credit new creams and powders as well as his tracheotomy and breathing machine which has generally improved his mood and made him far less fussy.