Photographer Hopes To Bring Awareness To Rare Genetic Disorder W - FOX 29 News Philadelphia | WTXF-TV

Photographer Hopes To Bring Awareness To Rare Genetic Disorder With 'Courage Under Wraps'

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PHILADELPHIA - A young boy suffers from a rare genetic disorder that causes so much pain; some doctors describe it as ‘hell on earth.’

Now, this boy is sharing his story with others.

“I’m hoping for a cure,” said Nicky Zahorcak.

Nicky is in pain due to a rare, genetic disorder known as recessive dystrophic epidermolysis bullosa or E.B.

“I can't help it, you know, I get so itchy. I hurt myself,” said Nicky.

A lot of the 17-year-old's skin is raw; the slightest touch can cause blisters that quickly spread.

Then, his skin falls off.

“Right now, all the bandages that you see everywhere even on my sides here, they're all raw skin," he said.

“There have been times when I had to leave the room and curl into a ball and start crying. Give him morphine until he's good enough to go on,” said his mom, Silvia Corradin.

Nicky's mother says very few people know about this rare condition.

She wants to change that and hopes awareness will result in more medical research.

“If we could just take 50% off the pain he goes through every day. It’d be huge. If we could just get those feet healed so he could walk. That would be amazing,” she said.

“Every time I step, it really hurts, and I get a blister. I sit at my computer because that's all I can do. I can't go outside, I can't walk,” said Nicky.

Philadelphia native, photographer Jodi Champagne, met Silvia a couple years ago.

After hearing Nicky’s story, she proposed a way to help.

So for the past 2 years, she's been documenting Nicky's day- to-day life.

Her photos are now published in a book called 'Courage Under Wraps.’

“My reasoning for doing the book is to bring awareness to this disorder so funding can be raised to find a cure or at least help them get out of the constant pain they're in,” said Jodi.

“It's really important to get the awareness going; to get the cure,” said Nicky.

Aside from the physical pain, Nicky suffers a lot of emotional hurt, especially from people who have a strange way of reacting to him

"They just stare. They just go, like that,they don't even smile. They open their eyes really big and like, 'what is wrong with that kid?” said Nicky “It's a little offending, I'm not some alien, you know.”

Nicky does his best to keep his spirits up and keeps dreaming of his future.

Well, first I want to be a pastry chef if I can. If I can't, I want to try to be a video game designer,” said Nicky.

Silvia’s biggest hope for her son?

“I just want him to be happy,” she said. “I know, he's in pain.”

In pain, but inspiring others with a simple message: smile, it’s the best thing you can do to anyone.

We thank Nicky and his mom for sharing the photos with us. We hope many will seek out the book, and see the pictures in color. We made them black and white in this story so our internet viewers wouldn’t stumble upon them and be initially disturbed and not read his story. Our goal is to raise awareness for Nicky and his mom. God Bless you both.

For more information on 'Courage Under Wraps,' please visit www.jodichampagne.com/



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