There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are. True enough, my Nicky is beating the odds, he’s very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children,Read More →

June 2001 – Nicky, 4.5 years old @ Stanford just before his dilatation. Following is an excerpt from the Book ‘Butterfly Child’ Chapter 9 “One of the things that turned out to be very frustrating about the move was finding a new Pediatrician. After much research I took Nicky to the first appointment and let’s just say this woman was a complete disappointment. Not only she was quizzing me on the minutiae of his care, which made me feel defensiveRead More →

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. When Nicky was only a wee bit lad (I am watching too much British/Scottish period drama, I amRead More →

Fighting for the rights of the disabled has been a big cause of mine since Nicky was born. Anything related to him not only to have the basic EB supplies, but for wheelchair access, awareness and the like. I fought really hard for some of these things, and most of them didn’t come easy at all as some of you that read my book Butterfly Child know only too well. To say that I was made to feel like aRead More →