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 moderate or delete posts if they are negative. I simply don’t have time for that. I subscribe to the mantra that if you have nothing nice to say, please don’t say anything atRead More →

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 with EB. When Jodi became aware of my son’s condition she wanted to help in some way and she felt a book which depicts the ins and outs of everyday life of myRead More →

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: 555Read More →

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 wholeheartedly thank my beautiful friend Jodi Champagne for without her, none of this would have ever happened. For years and years… and years, we were alone. Let’s face it, a rare disorder isRead More →

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 that haven’t healed in a decade, the horrible, crying spells Nicky has for everything under the sun, the heartache and the pain that never go away, will be hard to explain in theRead More →

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 a while later, when she saw photos of Nicky’s wounds I posted on my blog here (Here’s one post titled ‘Under The Bandages‘ and another one of simply ‘Wound Pics‘) that she decidedRead More →

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: 505Read More →

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/ Jodi is working on getting it available for the Kindle and Nook, but it’s quite tricky and I am not sure how long it will be before that is going to happen.Read More →