As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the College I am attending, wants to make a difference and help the cause, we need a cure and we need it NOW! She started photographing Nicky’s life and him living with EB in an effort to make a difference. This is a project that may take months to finish. She is photographing Nicky’s bandage changes, him at school, at the doctor, at the hospital and in whatever situation you can imagine to help gain a broader understanding of what his life is like.
She has started a Facebook page for this project where she is sharing her thoughts and her photos and anything else related to it.
I hope you can LIKE IT!
