Tag : Butterfly Child

30 posts

A little update on the book… I am still waiting for a few replies from literary agents… not sure I want to wait much longer. I initiated the process with Lulu, so I am formatting the book to their standards as we speak. I wish I knew someone famous that could get me this book …
As of yesterday, my book Butterfly Child is officially done. I cried a thousand tears writing this memoir, which encompasses the past 20 years of my life. As of right now I am doing a final re-read, going through every page with a fine tooth-comb, making sure the grammar is top notch. I want to …
A big thank you to those that sent their questions to Nicky! Here’s the video as promised. Connor said he feels left out, so please submit more questions for Nicky and some for Connor too for another video coming soon! Thank you so much for your kindness and for caring about Nicky. Let’s kick EB’s …
As 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. …
Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA …
There seem to be a little confusion on what books are being made right now about Nicky, so I am here to clear things up a bit. Nicky is, of course, my son. He was diagnosed at birth with Epidermolysis Bullosa, the Recessive Dystrophic form. As devastating as this diagnose was at the time, it’s …