Nicky was born on November 25th, 1996 in Mesa, Arizona and was diagnosed within 12 hours of his birth with a form of Epidermolysis Bullosa; a little over a month later we received his diagnosis of Recessive Dystrophic. 18 years later, we were told, following a DNA analysis, that he has the “Generalized Severe” subtype, which is the worse form of RDEB.
Nicky is now 23 years old and there's a LOT to tell. I wrote a whole book about his first 18 years of life called “Butterfly Child”. We’ve been through many trials and tribulations, including insurance companies denying bandages, delaying surgeries, wondering ‘why’ I needed to take Nicky to a specialist, not to mention our two bankruptcies over medical bills and constant inflow of them even now - and the list goes on, and on… and on!
Nicky is the sweetest boy ever, always was, and still is today. Unfortunately, he itches uncontrollably, is in a lot of pain, and his bandages need to be changed very often. We usually change ‘something’ every day. These bandage changes are very painful, and Nicky now needs heavy pain medication to get through them. He plays video games or watches TV while I do them to take his mind off of it. Nicky also has a g-tube, meaning he gets his nutrition via a tube in his stomach.
The problem with children with RDEB is that time is not their friend. Children can die anytime from infections, and as they grow older, they have to worry about skin cancer and problems with malnutrition, which Nicky does not have thanks to his g-tube. I only know of a couple of patients that are over 40 right now, maybe a few in their 30s, and perhaps they are not as severe as my son. It's scary for a mom. While I know Nicky’s health is good overall at this moment, the unknown is constantly at the doorstep and something I prefer not to think about. I'd rather concentrate on a happier future for my son. I KNOW it can happen. Hope is my big motivator.
Unfortunately, I know the severe toll EB has taken on Nicky over the years. It just kills me. He used to walk fine, even run a bit, while now every single step is excruciating. His wounds used to look a certain way; now that those areas have been open for so long, the wounds looks different, and it scares me. Nicky used to be pretty active, all things considered, but now he sits at the computer all day, hardly moving at all. The most important thing for me to do is to keep him *happy*, because the last thing I want to happen is for him to ‘give up’.
We are keeping an eye on research. Where there is life, there is hope. It’s hard for us to think of the future, not knowing what it might bring. We live for the day and that’s all we can do.
-Silvia, Nicky’s mom