September 2007 Nicky attended an EBMRF (ebkids.org) fundraiser at the Pier in Santa Monica and got to meet Joely Fisher, half-sister of Carrie Fisher. She was adorable and so sweet to him. Just to know she knows what EB is makes my heart swell! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 779Read More →

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 →

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 →