Syracuse (WSYR-TV) - For more than a year, NewsChannel 9 has followed the story of Easton Friedel, the Weedsport baby who suffers from a genetic skin disorder known as Epidermolysis Bullosa, or EB.
The disorder makes Easton’s skin blister at the slightest touch, causing him to be in and out of the hospital for most of his young life.
This week is National EB Awareness week, hoping to promote a cure for the disorder and bring to light the emotional, financial and physical burden the disease causes families.
Easton has been home for four months, the longest he’s been out of the hospital since his birth.
“He's doing very well at home since he came home at the end of June. He's been improving a lot,” said Easton’s mother Danielle Friedel.
Life at home is a balancing act, as caring for Easton is a full-time job.
A nurse is on hand 20 hours a day to help his parents, and Easton is on a ventilator at all times.
“It helps him a lot. He is much more active. He is not oxygen deprived,” Friedel explained.
Dressings on his arms and legs are changed every three days. The process can take two hours to complete.
But his mother says Easton has made progress. His incredibly fragile skin is becoming tougher and his hands are no longer bandaged.
Developmentally delayed, Easton at 14-months is just beginning to sit-up and roll over.
But every achievement is celebrated and Friedel says he is developing quite a personality.
“He has an attitude, he will let you know when he's mad, but also he's very loving. He will give you kisses, he will wave to you and he likes to be held now where before, he hated being touched,” Friedel said. “Hopefully overtime, with the things we are doing with his pediatrician, we can improve his skin. So we do the best we can. There is no cure, so treatment and preventing him from getting wounds is the main priority.”
A priority of Easton’s parents is to raise awareness for the rare and painful skin condition.
Easton has become somewhat of a poster-child for EB, gaining more than 150,000 followers on Facebook.
“It shows that people actually do care, they are reading, they are sharing it with friends, family members and people they know,” Friedel said. “Hopefully in the next year, we will be able to do more things.”
The next year will also bring more milestones, such as Halloween.
Easton will be trick or treating with his brothers dressed up as a cow.
You can learn more about EB and how you can help here