Florida family coping with rare skin disease - WCAX.COM Local Vermont News, Weather and Sports-

Florida family coping with rare skin disease

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"They come up to me and go, 'oh, I'm so sorry' -- and I'm not. God gave him to me. And that's my son," said Sirena Wiley, whose son, Benjamin, suffers from Epidermolysis Bullosa.

They're often called "butterfly children," because their skin is as fragile as a butterfly's wings.
"It's where the skin is missing the collagen and the protein to keep the layers connected..so any type of friction or pressure against the skin creates a blister," Wiley said.

But Benjamin Wiley's parents say their son is the strongest person they know. "And that's why we got these shirts, "Ben Jr.'s Army" -- he's the commander and chief," Wiley said.  

His rare genetic disease affects one in 50-thousand and 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," Wiley said.  

For the parents of an E-B child the care is constant and at times - overwhelming. The daily routine involves constant 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...I mean, he's a normal baby, he tries to do normal things," Wiley said.

But ben's parents say their son's birthday is a chance for them to create awareness. "God gives his precious jewels to the strongest people," Wiley said.  

Kristen Skovira reporting

Next week is EB Awareness week -- www.eb-awareness.org/


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