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 hard to explain in a few words what it means to raise a child in constant pain, whose condition is considered terminal, a condition whose the medical community is oblivious about and whose insurance companies discriminated against from the very beginning.
When Nicky was born 16 years ago, I felt helpless and hopeless. I was told Nicky would never see his first birthday. Considering we had to bury our firstborn a mere 18 months earlier, I am not sure I can convey the heartache our family endured. After all these years, I feel that not only our story should be told, I honestly feel our story NEEDS to be told.
How many relatives, friends and even members of the medical community scattered and not only offered zero help, but did their very best to completely AVOID us? I’ve lost count. Just recently Nicky’s dad, when confronted with the question of ‘what it’s like’ to be a parent of a child with EB was forced to answer with the following words… “Make sure you’re not too close to your family and friends, as you will see them scatter and disappear in front of your very eyes. They will treat you like a leper and avoid you at all costs. Oh yes, they may ‘claim’ they care, but actions speak louder than words”. Sadly, I could not agree more.
So, for the past many years, I’ve written journals, blogs, emails and anything else I could think of to remember what was going on and I am at the present moment compiling them into a book, the complete, uncensored story, with unedited expressed feelings and heartache my son had to suffer and how our life changed in so many ways it takes an entire book to explain.
The book is called ‘Butterfly Child‘ and it will be released in late 2014. I’ve made a Facebook Page for the book where I share photos of Nicky through the years and excepts from the book. Please LIKE it today so you may be informed of when the book comes out and what you can do to raise awareness of this horrible Orphan Skin Disorder.
The SECOND book that is being made at this point will actually be released next month!! September 20th is the actual date and it’s called ‘Courage Under Wraps‘. This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakes up in the morning to the moment he goes to bed at night. There are many photos in there of bandage changes, trips to the Doctor, holidays, pain and suffering and sibling rivalry. I just got a sneak peak and I felt it was ENORMOUSLY powerful. There is a Facebook page for that book as well which has gotten a great amount of interest, many photos that did not make the book (and some that did!) have been posted, LIKE it today to keep informed on the release and various events. There will be a gallery opening on Sept 20th in Los Angeles, details will be following.
These books aim at making people understand the plight of the families dealing with a rare condition nobody knows about. It takes courage to share, courage to live with this extremely painful condition and our aim is to make EB a more known condition so more funds can go to research which will take us a step closer to a cure.
Thank you so much for caring and please help us spread the word about this brutal condition and help us getting closer to a cure.