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 →

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →

I will try to update this blog on Nicky every now and again, and I felt it was important to start now because, even though he’s finally improving greatly from his 6 months ordeal, there are things that have deteriorated from him spending a significant amount of time not being able to move or eat. As I am a writer, I wanted to also make sense of it all from a mother’s perspective. One of the main reasons why all of this happened in the first place and it took so long to get things resolved is because Nicky, being 22, means he can no longer see all the Doctors that took care of him when he was a child. Considering how freaking RARE RDEB is, everyone is just at a loss on how to help, that’s where frustration and a million phone calls come into place. “I will MAKERead More →