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: 352Read 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 timeRead 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.comRead 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 tailRead More →

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: 539Read More →

September 5, 2004 Connor’s first birthday was really fun for Nicky. He laughed and laughed seeing Connor destroy his mini-cake (which we got in purpose, LOL)! After I gave Connor a bath we continued the celebration with present opening. Connor at 1 was a little doll. Nicky just adored him. You can feel the connection just looking at this picture! They are still extremely close today and always will. Their bond is unbreakable. More in the book –> http://www.butterflychildamothersjourney.com  Read More →

December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast in the snow, he was so cute. Just yesterday my husband asked me if we could give away this coat he’s wearing in this pic. I am not a hoarder,Read More →

August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far fromRead More →