Updates on Nicky

Hello everyone! I just updated Nicky’s CaringBridge Blog with some info on upcoming trials for those interested with links etc. You do have to create an account to access it, but please know it’s free. I do try to keep sensitive information regarding Nicky’s health on that blog only because there are many troublemakers out there and I can block people access to it that have caused me grief in the past. Because of my tireless efforts in raising EB awareness to find a cure for the past 16 years or so, it has made me a target. Thankfully I can block people that say the craziest and rudest things so that’s the reason why I normally moderateRead More

Working Toward EB Awareness

For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being a rare, often called an “orphan” condition, it gets little airwaves. This is my effort in raising consciousness about EB at large. Whether I am actually making a difference, I don’t know. But I won’t stop. Ever. My latest guest was Jodi Champagne, which is a well respected photographer and good friend of mine, who did the Photographic Documentary called “Courage Under Wraps“, which depicts my son Nicky’s life withRead More

Ask Nicky Video!

A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s butt! Much Love, Post Views: 20

It Takes A Village

So much to tell with the amazing pouring of support due to the story on Nicky that aired on the local FOX11 and more…. Before I get started… four links: 1. Nicky’s original story that aired on FOX11 in late April… http://www.myfoxla.com/story/25298119/a-rare-condition 2. Nicky’s follow-up story on FOX11 that aired in mid-May of Nicky’s living his dream of being a pastry chef http://www.myfoxla.com/story/25532551/nick-zahorak-is-living-the-dream-of-being-a-pastry-chef 3. Nicky’s page on Facebook where I post updates on him, run by our friend Jodi Champagne. https://www.facebook.com/NickyLivingWithEB 4. Link to get the book ‘Courage Under Wraps’, a photographic documentary by Jodi Champagne of Nicky’s life with EB http://www.blurb.com/b/5024440-courage-under-wraps (print and ebook). Itunes version available here: https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 I can’t start this blog without sincerely and wholeheartedlyRead More

Not A Pretty Picture

Please Note: I had published this post on HubPages but they keep deleting my posts for all kinds of crazy reasons (not high enough ratings, what?). I finally gave up on them and here’s my post again. Reflections and Confessions… I just finished reading a beautiful, photo-filled book of a mom of a beautiful girl with Down Syndrome, and despite the heartache and the many pages I earmarked because “I feel the same way!”, at the same time, I realized that the book I am writing (which will have photos throughout) about Nicky’s life, will not really show what we deal with everyday. The realities of having a 17 year old with Recessive Dystrophic Epidermolysis Bullosa, with wounds thatRead More

EB Awareness

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help. Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until aRead More

Please Watch!

Just a quick post! Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 Post Views: 14

Courage Under Wraps Gallery Opening

September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event. The book is available from Blurb as a print and also as a PDF and as an ebook for the iPad. The book is 142 pages and it has hundreds of photos of Nicky suffering and living with EB, from bandage changes to trips to the Doctors, hydrotherapy and iron infusions. Part of the proceedings from the book go to the EBMRF (Epidermolysis Bullosa Medical Research Foundation) http://www.ebkids.org/Read More

Nicky’s Left Hand – Before and After Surgery

Hello friends, family and everyone interested in seeing how Nicky’s left hand surgery went! I finally have time to do this blog post… Here Goes! This photo below is a photo of his hand BEFORE surgery. It shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. Here’s the hand POST surgery, he has a pinky now! Yey!!! The reason why Nicky wanted his pinky ‘fished out’ was not because he needed it for anything, but the problem with it being webbed inside the hand was that it made it impossible for him to move his wrist much without a considerable amount of pain. OK, now, on to his thumb: Below is a pictureRead More

Courage Under Wraps

Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there. This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakesRead More

A Tale of Two Books

There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning. When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday.Read More