July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 542Read More →

June 2000 – Nicky was just a little over 3 years old in this picture hugging Barney. He loved Barney and Teletubbies, Sesame Street and Blue’s Clues, he would watch them all day long, over and over again. At the time he could walk OK, albeit very carefully and slowly, and was a smart as a whip. When the school district came over a year later to see if he was ready for kindergarten he was able to recognize every animal they showed him, every letter, and count to 15. EB does not and has never affect his mind the least bit and if anything, since he is not easily distracted by other things because he can’t do other things, he became extremely smart about certain things, especially computer games. He’s no dummy to be sure. One thing that helps him as well is how calm and zen he isRead More →

September 2014 We had quite an encounter with Orlando Bloom at the ROCK4EB Fundraiser in Malibu. We had a 10 minute chat.. He rubbed my shoulder and told me I was a brave woman. Mind Blown!! Then he took a photo with Nicky. A short video of the encounter here: https://www.facebook.com/nick.zahorcak/videos/844285872260202/ More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 795Read More →

September 2010 Connor had gotten a kitty for his birthday and the boys just loved her. They still do! She’s too heavy now for Nick to pick her up or hold her anymore (I need to put her on a diet, LOL), and she’s become a bit reclusive over the years, but she still takes the love if she’s in the mood. I wish she was more friendly! She’s so scared of everything and everyone. Oh well, maybe it’s time to adopt a friendly cat at the pound! We shall see. More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 881Read More →

February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not wait in line otherwise we would have missed Shamu, so on our way out we stopped and got him the cupcake! He was thrilled.” More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 831Read More →

Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchair to car seat etc, but he often gets blisters just from doing that. This means he’s confined to a wheelchair, and due to his skin fragility, he cannot do many things besides watching TV or playing video games. Something that I do for Nicky for fun is take him to see a live taping of TV shows. We’ve seen several over the years, and this is something that’s a lotRead More →

September 1997 Nicky was starting to crawl at 10 months old and it was worrisome. His problems with his throat had become evident, as he would not swallow his saliva, so the front of his shirt was always wet. His hands (which I had no idea they could web) were starting to look pretty red and they would wound often. But this kitty that we had was amazing with him. She would let Nicky sit on him, pull his tail and everything else, and he would just sit there, taking it. I miss him!! Nicky does too! More in the book –> http://www.butterflychildamothersjourney.com   Post Views: 880Read More →