RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all I want to is disappear. It was a low I do not wish upon anyone. When your son tells you he wants to “give up” it’s a hard pill to swallow. Today I dust myself off, get up, and try to be positive all over again. My son needs “happy” me. I do try. Nicky overall is hanging in there. He has some worrisome wounds, a throat dilatation that he needs but cannot get due to COVID-19, and the usual daily wound and bandage change routine that drives me up the wall because I have to witness my son cryRead More →

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 myRead More →

A few weeks ago I read a comment from someone stating how great the advancements for a cure for EB were coming along and how they were happy to wait. I just bowed my head. Just in the past couple of years so many children with EB, similar to Nicky and many even younger than him, have passed away, that this comment of being “fine with waiting” and “we’ll get there eventually” just upset me. I am sorry, call me crazy, but my child has been “waiting” and suffering for almost a couple of decades now. RDEB (Recessive Dystrophic EB) is degenerative, meaning it gets worse with age. At this point Nicky is stable, but things could change on a dime. We are still holding out hope because there are so many people researching a cure at this time, but Nicky does not have TIME. He can’t wait much longer.Read More →