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: 430Read More →

Ian Ziering has my full cheering section support in my house as he plays to raise money for the EBMRF on the Celebrity Apprentice, premiering tonight on NBC. The EBMRF stands for “Epidermolysis Bullosa Medical Research Foundation” (website here: http://www.ebkids.org). The EBMRF and their fundraising efforts are behind the research for a cure that have been going on at Stanford for as long as my son has been alive, and of which clinical trials have started which Nicky will beRead 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 firstRead More →

I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have friends that really care and that means a lot to me, so, THANK YOU! OK, since yesterday afternoon there are GOOD news and BAD news. I will start with theRead More →

Imagine… for a moment, being so thrilled about finally having that baby you longed for so long. This is 21 months after the unimaginable happened, when you had to bury your first baby, being told, in a little room in a hospital, that your second newborn would most likely not reach his first birthday. Imagine being told that there is no cure, no treatment, all you have to do is instantly be transformed into a nurse, insurance not paying forRead More →