Published: Oct 11, 2012 6:49 PM EDT
Updated: Oct 11, 2012 6:59 PM EDT

ARCADIA, Fla. - A young boy from Arcadia will celebrate his first birthday on October 27th. But this party will be extra special because doctors told his parents, he'd never live to see it.

They're often called "Butterfly Children" because their skin is as fragile as a butterfly's wings. But Benjamin Wiley Jr.'s parents say, their son is the strongest person they know.
"They come up to me and go, 'Oh I'm so sorry.'" said Wiley's father, "But I'm not. God gave him to me. And he's my son."
It's called Epidermolysis Bullosa or EB.

"It's where the skin is missing the collagen and the protein to keep the layers connected. Any type of friction or pressure against the skin creates a blister," said his mom, Sirena Wiley.

According to the Dystrophic Epidermolysis Bullosa Research Association of America (or DebRA), his rare genetic disease affects one in 50,000. There is no medical cure.

"People need to know about it. I don't want another mom to be in my shoes and have her baby come out with his hands and feet completely raw," said his mom.

For the parents of an EB child the care is constant and at times - overwhelming. The daily routine involves treatment of wounds, bandaging and pain management.

"Pray through it, or cry through it. Some days he'll cry all day, some days he'll sleep all day. He's a normal baby, he tries to do normal things," Sirena said.

For Ben's parents say, their son's first birthday is a chance for them to create awareness.

"God gives his precious jewels to the strongest people," said his father.

Ben Junior's first birthday party is being held at the Elks Lodge in Arcadia on October 27th, from 12-4 pm. His parents are inviting anyone to come and celebrate!

EB awareness week is October 25th through the 31st. If you would like to learn more about how you can help the Wiley family, visit Ben's Facebook page at