Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. I surprise myself at the kind of person I’ve become. I literally explode when people treat my son with any degree of disrespect because he does not deserve it. He’s the sweetest boy, ever. I may not know much, but I am an expert in my child’s needs, and you can bet on that. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. All you have to do is look at cultures thatRead More →

If there was one question that I was asked more than any other in regards to my son’s condition is why he and others with RDEB look so pale and why they don’t seem to age per se, they always look very young. Even when Nicky was interviewed by FOX11 earlier last year, the most pressing question that came to me from the reporter and later by some of the followers of Nicky’s page is why Nicky looked so young. “He does not look 18 at all, why is that?” There are many answers. For one, most RDEB patients have some sort of iron deficiency. This is because iron is lost from the extensive deep wounds and serious bleeding that occurs, and loss of iron has the side effect of making the skin pale. Normally after Nicky gest an iron infusion he gets rosy cheeks, so I can always tell howRead More →