Syracuse (WSYR-TV) - In the five months since he was born with a rare and extremely painful skin condition, Baby Easton Friedel has captured tens of thousands of hearts in Central New York and beyond.
Easton was born with rare disease known as Epidermolysis Bullosa, or EB. Children with the condition are called "butterfly babies" because their skin is as delicate as the tissue that comprises butterfly wings.
A Facebook page devoted to the infant’s progress
reveals an outpouring of love and support – which is what his parents say he needs moving from the hospital to his home in Weedsport.
“He's so special, I know that he was bought here for a reason and at first we were mad at the world, didn't know why this would happen to us,” said his mother, Danielle Friedel.
Danielle and Jared Friedel say they are aware of affect their child’s life has on people across the country.
“He's a special little guy and I think it’s brought much awareness to EB because we never knew what it was,” Danielle Friedel said.
Raising a child with such a condition has been a challenge.
A task as simple as changing a diaper can take more than 10 minutes. And the biggest challenge is wrapping his legs and arms in bandages every other day to protect his sensitive skin.
“Now we're just hoping over time his skin will heal and get better and the best that it can grow stronger, that he can be a baby and grow up and be a healthy little boy,” Danielle Friedel said.
Baby Easton goes to physical therapy twice a week to help him gain strength. With each passing day, he makes progress.