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: 427Read 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 →

Halloween 1999 – Nicky was almost 3 years old when I took him to the mall to trick-or treat. I always looked for soft costumes and this one of “Po” of the Teletubbies totally fit the bill! At the time we lived in Arizona. How cute is my little one? More of Nicky’s story in the book… Thank you so much for your support!! http://butterflychildamothersjourney.com Love & Light,   Post Views: 541Read More →

August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go visit her often and she would always ask for kisses. It was so sweet. I miss her dearly, but I know she had a long life, passing away only a couple of monthsRead More →

January 2008 – Nicky showing his flexibility! This is one of the few things he can do with his body. He may not be able to walk or move much, so it’s always fun for me to see this fun/crazy side of him. In this picture Nicky was 12 and he hasn’t really changed much at all, he truly looks the same!!! That smile and the ability to not think about his condition and concentrate on doing what he canRead More →