For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being a rare, often called an “orphan” condition, it gets little airwaves. This is my effort in raising consciousness about EB at large. Whether I am actually making a difference, I don’t know. But I won’t stop. Ever.
My latest guest was Jodi Champagne, which is a well respected photographer and good friend of mine, who did the Photographic Documentary called “Courage Under Wraps“, which depicts my son Nicky’s life with EB. When Jodi became aware of my son’s condition she wanted to help in some way and she felt a book which depicts the ins and outs of everyday life of my son would be the best way. Parts of the proceedings are donated to the EBMRF.
From the start, Nicky was interested. He wanted awareness, because he knew that without awareness there is no cure. He wanted to do his part.
About a year before I met Jodi, I had started my own photographic documentary (the photo above is one that I took in June 2010), but it proved to be difficult for me to do. I couldn’t sit and snap as my son was in pain. I just couldn’t do it. As it is, it’s very hard for me to see photos where he is in pain and the book has proven difficult for me to look through. I don’t enjoy it at all. One would think after all these years I would get used to it, but I never have and I never will.
Champagne’s previous book, “Courage Under Wraps,” was a day-in-the-life portrait of then-16-year-old Nicholas Zahorcak, who has a rare genetic disorder called recessive dystrophic epidermolysis bullosa where the skin is so delicate any type of friction can cause blistering. Nicholas’ condition requires daily wound care including changing bandages, a lengthy process than can take several hours for one bandage.
“I got this overwhelming feeling that I need to tell his story,” Champagne said when she first learned about him.
Nicholas, who recently turned 19, and his mother, Sylvia Corradin, agreed to share their story to raise awareness about the condition.
Champagne spent about a year documenting Nicholas and his mother’s daily routine, including procedures at Children’s Hospital.
“Working with Jodi was easy and even fun. We tried to make jokes to lift Nicky’s spirits up,” Corradin wrote in an email. “The bandage-change routines are usually quite tough, and from the time Nicky was little I felt distraction was always welcome.”
Corradin added it was difficult to have their life documented in such a way. “Even though it’s your life, it’s really strange and hard seeing it in a book like that, but it’s the truth. This is our life. It’s a great book,” she wrote.
There is always an element of sadness to see your son in pain, but I always felt great pride in knowing Nicky was open to this, he wanted the awareness. Jodi often asked him if it was OK with him, that she could stop anytime, but he wanted to push forward.
This is why, when strangers (even people with EB, mind you) come up to me out of the blue and call me “crazy” and other insults I rather not mention nor want to remember, for allowing these kinds of photos to be taken of my son “just to sell some dumb books”, all I can do is lower my head in absolute disbelief. To bring people down that are trying to make a difference is extremely sad. I am not sure if they do that to elevate themselves or feel superior or what. Either way it’s a negative. It is also true that some individuals see their condition as something to hide, something to be ashamed of. Nicky is not ashamed, nor embarrassed the least bit. He wants to make a difference. He should be applauded and loved for the kind of amazing human being he is, not ridiculed.
Love is the answer. Love is always the answer.
Nicky was interviewed 2 years ago by Gina Silva of FOX11 News here in Los Angeles about the release of the book. I uploaded the video on my channel and it was a good thing since they reworked their entire website and it’s nowhere to be found. You can see it below… I have the one about his Pastry Chef day as well I need to post someday, LOL.
Sending love and light