Blog · August 31, 2014

Butterfly Child

butterfly_child_cover-copysmall2As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18 year journey with my son.

I am still working on the book, and it will most likely be done by the time Nicky turns 18 in late November. At that point I will be shopping around for a publisher. I am hoping it can be available sometime in early 2015 at the latest, depending on the publisher, of course. I will keep everyone posted.

In the meantime, my simple request is to please go and like the Facebook Page I made for the book now. It includes excerpts from the book and various photos of Nicky when he was little. I truly appreciate everyone’s support and if you can, please share this page with your friends! The more support I gather, the more eager a well known publisher will be willing to take this project seriously and give it the attention it deserves.

Why a book, you may ask? For many reasons. Besides the given of awareness and to perhaps share my journey to help others in a similar situation, perhaps this book will serve as a story of life in America with an orphan condition. I am certain other rare conditions encounter similar challenges, whose story is seldom written about. From Insurance Companies refusal to cover the most basic needs for any EB patient, to the devastation I felt when Nicky was diagnosed with an incurable, rare and always-fatal skin disorder, knowing that at the time of Nicky’s birth there was no research for a cure at all. In the months and years that passed I had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything I could to keep him alive, often with very few resources, little to no help and even less information available.

Thank You for your support,

Love & Light,