Hell on earth, that’s how some doctors describe Recessive Dystrophic Epidermolysis Bullosa also known as E.B. It’s a horrible genetic disease that Nicky Zahorcak was born with. A lot of his skin is raw, the slightest touch can cause blisters that quickly spread.
He says, “Right now, all the bandages that you see everywhere even on my sides, they’re all raw skin.” His mother Silvia says very few people know about this rare condition and she wants to change that. She’s hoping awareness will result in more medical research. Silvia Corradin says, “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.”
Photographer Jodi Champagne has been a witness to all of that. For the last 2 years, she’s been documenting Nicky’s day to day life. Her photos are now in the book, Courage Under Wraps. Jodi says, “My reasoning for doing the book is to bring awareness to this disorder so funding can be raised to find a cure.” Despite his excruciating pain, Nicky is patient, kind and truly wise for his age.
When I asked him what message he wanted to leave us with, Nicky said, “Smile, it’s the best thing you can do to anyone.”
You can purchase, Courage Under Wraps at this website.
Nicky’s Facebook page.