Blog · January 16, 2018

Moving Forward…


As I was changing Nicky’s bandages last night I noticed how much better his wound mass is compared to just a few years ago. The cream (from the Stanford trial) and other things I’ve been adding to the various previous creams I used for the past few years have truly made a difference.  Our motto has been and always is “no wounds” and that’s why I over-pad areas prone to itching to make sure his skin can heal or does not get injured in the first place. Wounds for Nicky can be a big detriment to his health. Areas that get over-wounded have a tendency of eventually not wanting to heal at all, but if I can get a wound to heal with moisture, that area will go back being strong. I was told when he was born that the #1 killer for RDEB patients was infections and for older patients skin cancer (Squamous Cell Carcinoma mostly), and the less wound mass, the less of a chance of developing either.

His worse area by far at this point is his right knee, and now there is a weird looking spot on it and it’s scaring me to death. They are planning to biopsy it, and I am even afraid of that. Fear and worry never leave the mind of a special need parent, no matter how much we try to shake that thought away. Thankfully, because of the cream and other things I put in our “concoction” Nicky does not have many chronic wounds anymore. There are areas that are weak, and areas like his buttocks where wounds shift and are painful, and other areas that baffle the mind like his feet-mostly wound free for a long time, but extremely painful to the touch, even without wounds. This is why he cannot walk, it’s atrociously painful for him to do so, and even when he just tries to “transfer” he gets a blood blister underneath his toes and on his sole.

Changing bandages every night is tiring, for both of us, but pain meds, wine and a fun TV show really help. We wish we didn’t have to do it, but our reality is that we do what we have to do. Soon I will take more photos of his newly healed wounds to show everyone. Nicky’s always been very open to “show” what EB is. While some others have ridiculed him, I think he’s brave. He’s very brave in fact.  This disorder has gone unknown long enough without anyone noticing it. I do hope that those that have ridiculed him in the past get over their judgemental ways and that they can find some love and compassion for those less fortunate. Spreading hate is never the answer, never. Some people forget the simple lesson we learn in kindergarten. If you have nothing nice to say, don’t say anything at all.

The longer I live, the more convinced I become of the fact that this must be all fate. Some kind of divine intervention, so to speak. I’ve seen women drink, smoke, take drugs, cocaine, shoot heroin into their veins, and they still have healthy children; they may be born addicted but they don’t have genetic disorders. Every ounce of my being a special needs mom relies on the fact that I will not give up and will try everything to make my son’s life better, no matter what it is. This is one of the reasons why I advocate so much for our children. Many of us are stuck in a broken system where insurance dictates what our children will receive. We hope for the best, but don’t know what the future holds in a world that wasn’t built for EB. All we want is for our children to not have to fight so hard to simply live. We cannot take a single day, a single year for granted, as every year that passes and our child has survived, we know we have won a small battle.

A couple of weeks ago we entered 2018. I have high hopes for this new year…
For starters, there should be a new trial for Nicky at Stanford he’s eager to participate in. We’ll also have cameras in our house again to film our participation in a feature film documentary about pain. I am also working on a couple of new books. The first one is going to be “conversations” between Nicky and I in an effort to get HIS point of view of his life with EB. He is 21 years old and has a lot to say. The other book will be one where  I will try to help women that suffered the loss of a baby.
Through it all I will keep spreading EB awareness, I will keep reading, keep watching movies, keep my spirits up and my keep my hopes high. Life is a roller-coaster. Good times and bad times abound. I will keep holding on and try my best to make a difference.

Help us spread the word that our children are important, our children deserve to live without pain and without wounds. Thank you SO MUCH!

Love & Light,