Tag : recessive dystrophic epidermolysis bullosa

16 posts

Success is a word measured differently with kids like Nicky. I consider a “great” and “successful” day, when we’ve gotten through a day without choking, vomiting or screaming in pain, or when we can spend a few moments laughing. ~Silvia Corradin  
Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. 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 …
It occurs to me sometimes that when people in general refer to Nicky or any child with EB as “medically fragile”, they may not truly understand what that means. And the truth is that the definition varies widely not only depending by the form of EB but also from patient to patient. Since my only “specialization” …
I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck …
I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire nor a scientist. I can’t …
As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients …
On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters Nicky gets (and pictures do …
November 2004 – Nicky was 8 years old here, back when I could still give him baths. I did put a little bleach in the water to kill infections, but not a whole lot. At the time the pain level was not as bad, plus his little brother, who was 1 year old at the …
I talked about my “Concoction” of various healing ingredients that I use to get Nicky’s wounds to heal on my blog here, and with the following video I wanted to show how I apply it on the wounds and info on where I get some of the ingredients and also about a couple of more …
July 1997 – Nicky was a little over 7 months old here and the problems with his mouth are already quite evident. Because he could not swallow his own saliva due to the severe problems with his mouth and throat, he would drool endlessly. So much that I would usually put a bib on him. …
October 2000 – Nicky was almost 4 years old in this photo. The red, swollen eye was caused by a combination corneal abrasion/wound inside the eyelid. Recessive Dystrophic EB means not only wounds on the outside skin, but also on all mucosal membranes, which include the eyes, mouth, throat and esophagus. These wounds on the …
June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When he was little he would …
A lot of people often ask me how I cope and how I move forward every day. The answer is… if my son can cope and endure, who am I to complain? The backstory of the quote below from my book “Butterfly Child” is an event that stayed with me and I always think about. …
I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛 I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to …
It’s EB Awareness week and I wanted something to illustrate EB without being “graphic”, so I decided to read an excerpt from my book, “Butterfly Child“. This is the beginning of Chapter 4, when we took Nicky home from the hospital. Here I describe the first month of having Nicky home and our challenges and …
September 2006 – When Connor was little he never left Nicky’s sight. He would sit right next to him at all times. It was so darn cute! Even today if I am looking for Connor, he’s not far from Nicky. Two peas in a pod! More of Nicky’s story in the book… Thank you so …