By:
On:
In: Blog
Tagged: ,

Good morning everyone!!! My book is now LIVE finally from the publisher’s website! Woot! Here’s some links for you! Paperback: The only way to get the book on paperback right this moment is through the publisher: http://www.lulu.com/…/butte…/paperback/product-22092004.html It will take a few weeks to “show up” on Amazon and Barnes and Noble, when it does, I will post the link. If you were interested in a “signed” copy from me, I will have a few available (for those within the US only) in a couple of weeks or so on my website. I wanted to keep the price low but this is a big thick book and it’s not cheap to print. I am sorry. To make it up to you, here’s some coupon codes websites:http://www.retailmenot.com/view/lulu.com &https://www.couponcabin.com/coupons/lulu/ eBook versions: As of today you can get the ebook at both the publisher’s website: http://www.lulu.com/…/butterfly…/ebook/product-22097219.html and iTunes: https://itunes.apple.com/…/book/butterfly-child/id979932054… As soon as itRead More →

By:
On:
In: Blog
Tagged: ,

Several years ago I compiled several stories from families dealing with EB and I made a book out of it. The result was amazing. Since I will never feel like I did enough to market this book the other day I decided to make a “Book Trailer” out of it to help a little. Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, andRead More →

By:
On:
In: Blog
Tagged: , , , , , , ,

Happy Mother’s Day everyone! In honor of all Mothers who had to give their children back, and as my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE for a few days. Here’s the Link —> Losing Alex <— (or you can click on the cover image) If you do not have a kindle it’s OK, there are free kindle reading apps for smartphones, tablets, PCs/Macs and even a free kindle reader app for your browser. http://www.amazon.com/gp/feature.html?docId=1000493771 Love & Light and Happy Mother’s Day! Post Views: 694Read More →

By:
On:
In: Blog
Tagged: , ,

Merry Christmas everyone! As my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE until Christmas day! Click here to go to Amazon… (a new window will open) or click on the cover of the book on the left. This is the book I wrote in an effort to share some light of what is like to lose a baby at birth, which, even in this day and age is still considered an invisible loss. Parents struggle with anger, guilt, and despair, often alone. I wrote Alex’s story (quite lengthy in its own right) as the beginning of the book I am writing about the life of my son Nicholas, who was born 21 months after Alex was stillborn and diagnosed at birth with an incurable and possibly lethal skin disorder called Epidermolysis Bullosa. This book,Read More →

By:
On:
In: Blog
Tagged: ,

Well, it’s official!! “Courage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure. While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there. 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 siblingRead More →

By:
On:
In: Blog
Tagged: , , ,

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 notRead More →

By:
On:
In: Blog
Tagged: , , ,

My new book is finally out and I could not be prouder! This is truly a labor of love. Alexander Luciano “Alex” was stillborn at full term, on March 1st, 1995 @ 4:29 AM.  He actually died the day before he was due, on February 25th, 1995. He weighed 5 lb 13 oz and was 19.5 in long. At the time we were told that he died of a cord accident, but after his little brother was born with a skin disorder called Epidermolysis Bullosa (EB) it is very likely he had the same thing too. EB could have played a major part in his demise. There are no words that can accurately explain what it feels like to hold your dead newborn. It’s like a stake through your heart. We’ll never forget the wonderful treatment we were offered by the nurses and staff at “Desert Samaritan Hospital” in Mesa AZ. TheyRead More →

By:
On:
In: Blog
Tagged: , , , ,

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002. I love to write, it’s almost  part of me to be able to express myself this way, I truly enjoy it, however at times trying to describe some events and the knee jerking reality smacking you in the face is not exactlyRead More →