Courage Under Wraps is a photographic documentary of a 16-year-old young man named Nicholas Zahorcak. He has a rare genetic disorder called Recessive Dystrophic Epidermolysis Bullosa. Babies that are born with this disorder are known as "The Butterfly Children" because their skin is as delicate as a butterfly's wings. RDEB is caused by a defective gene that does not allow the layers of skin to hold together. A simple friction like itching or even a simple hug can cause blistering. Once blistering occurs then the skin lifts off. Giving it an appearance similar to a burn victim.
Nicholas has allowed me into his life to show you and the world what he suffers with on a daily basis. As I started photographing his story my only concern was to shoot what I saw. What I thought people should see. Not to be edited by what people can only handle. What you will see despite all the pain, obstacles and adversity is a courageous young man. Nicholas's goals and dreams are to bring awareness and raise money for research on this disorder and his biggest dream is to find a cure.
As the Choice of Nicholas, with the purchase of this book a 100% of the proceeds goes directly to research. An organization called EBMRF Epidermolysis Bullosa Medical Research Foundation. http://www.ebkids.org
Thank you in advance for taking the time to share in Nicky's daily life. As well as helping him raise money for research on this horible disorder and making him one step closer to his dream coming true by finding a cure.