Tag : Epidermolysis Bullosa

96 posts

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 …
September 2003 – Nicky wasn’t quite 7 years old when his little brother Connor was born. Nicky would spend a lot of time just staring at him in awe! He was so happy when he was born that at the hospital he told me he was so happy he now had “a little brother to …
Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”. He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would go to culinary school if …
If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better. When you have a child with a “terminal” condition, however, (Nicky has the Recessive Dystrophic …
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 …
This is part 9 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time …
I know this is not a popular stance, or maybe it is, but if living with a child (he may be 18 now, but he’s still my child and will always be-and he will always live with me!) with a rare form of Epidermolysis Bullosa has taught me, is that no matter how much a …
From My Book “Butterfly Child” Love & Light,  
My new giveaway for my book “Butterfly Child” is now live! Enter for a chance to one 1 of 2 Autographed copies! Autographed by both Nicky and I nonetheless!! Here’s the link! –> https://www.goodreads.com/giveaway/show/150684-butterfly-child Thank you so much for your support… and if you have already a copy, please consider leaving a review! Much love <3
As I posted yesterday, wound pics generate a barrage of negative comments on Facebook, they usually end up being reported and deleted, which is why I don’t post them there anymore. It’s just not worth getting banned over them when I can just post them here. This is EB-more specifically, Recessive Dystrophic Epidermolysis Bullosa-Severe Generalized …
I came across a reddit page yesterday that deeply disgusted and disturbed me. The title of the post was this: “If I found out my child had that (EB), I would kill them in their sleep.” This is sadly not the first time (and it won’t be my last) where I encountered ignorant comments from …
I was touching Nicky’s new skin on his foot the other night while changing bandages, and while it looked great and normal, just touching it I could tell that a tiny little movement across his skin with my finger would tear it right off. The other foot was plagued with blood blisters just from attempting …
Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the …
This is part 6 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time …
It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago… After I took off the bandages, big areas of skin just started peeling off the top …
This is part 5 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things …
One would think that after 18+ years, nothing about EB would surprise me anymore. Well, it does. EB still manages to shock us at what it can do and how it manifests itself. Last night as I was taking off a bandage from Nicky’s upper left arm, it looked as if an infection (pus) was …
On the Facebook page I have for the book I wrote about my journey raising a child with RDEB called Butterfly Child, I started posting a few images from Nicky’s first years and commenting on either what was going on at the time or explaining things about the picture per se. As time moves on …
I updated my Caringbridge Blog today (here’s the link–> http://www.caringbridge.org/visit/nickyz/journal/view/id/554ba814f02065dc3614f506) and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks. It’s been two years now since I had to start giving Nicky pain meds basically 24/7 and …
Apparently the past 18 years I had my head completely in the sand. The cure for EB was in my cupboard! Who knew? Instead of putting fancy creams, or high tech bandaging and wound healing products, I should have just covered Nicky’s wounds with potato skins and cooked onions and mushed them up good enough …
I guess you can call this my first VLOG. I wanted to do this with Nicky but he’s not feeling well, so I just went on and did it myself. I sincerely hope it helps someone! Love & Light,
I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is …
If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages. There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the list goes on and on. …
Hello everyone! Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you have any questions for Nicky …