|Published:||Jul 24, 2013 5:14 PM EDT|
|Updated:||Jul 24, 2013 7:10 PM EDT|
ARCADIA, Fla. - WINK News first introduced you to the Wiley family and their son, Ben Jr. last year. Ben suffers from rare and painful genetic disease that causes him to blister all over his body.
At the time, doctors didn't expect him to make it past his first birthday, but as Kristen Skovira learned, Ben is defying the odds.
"I think in my heart I knew he was going to be okay and I think he's gonna be fine. I think as he grows he'll get stronger," said his mom, Sirena Wiley.
Ben Jr. is always smiling. But the smile and the bandages mask severe pain caused by a rare genetic disease that affects one in 50,000.
It's called Epidermolysis Bullosa and there is no medical cure.
"Constantly battling infections," said his mom.
"Those suffering with the disease are often called "Butterfly Children," because their skin is a fragile as a butterfly's wings.
His parents, Ben and Sirena say even though their little boy's body slows him down, his mind is racing ahead.
"He is real smart, he can get an iPad and he knows what to do, find the app he wants, then do it," said his dad.
The toddler, who will be two in October, is starting to talk and walk, but every step poses unique problems.
"The other day I caught him walking up and down the couch and I did dressing changes and both of his feet on the bottoms had blisters bigger than a quarter," she said.
The Wiley family says they continually pray for for a cure and say several out-of-state studies appear promising.
"I keep telling myself a cure is coming, a cure is coming. Because if Ben Jr. was to be cured now, he could live the rest of his life and we would never know that it was ever there," she said.
Next month, Ben Jr. is traveling to Miami and Saint Petersburg for more treatments.
If you would like more information on EB or the Wiley family:
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