“Butterfly Child” NOW AVAILABLE!!!

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 itRead More

Living with Epidermolysis Bullosa

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 succumbRead More

My Gift To You

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: 27

My Kindle eBook ‘Losing Alex’ FREE until Christmas Day :-)

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 aboutRead More

Courage Under Wraps

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 wakesRead More

A Tale of Two Books

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.Read More

Losing Alex

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 toRead More

Ways to go…

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 toRead More

Worth Reposting

In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about politics until recently; my parents live in Italy BTW. My opinion does not come from a TV channel, newsprogram or a newspaper I chose to believe. My views and opinions come from my PERSONAL experiences. It’s truly as simple as that. My life. Period. I remember vividly when Clinton became president. I couldn’t yet vote, but I wasn’t happy. I had been aRead More

My book now available for the KINDLE!!

Special Mommy Chronicles I am so excited to announce that my book  “Special Mommy Chronicles” is now available for the KINDLE for only $8.99!! Here’s the LINK! http://www.amazon.com/dp/B004VMPX3M   My publisher is also working with APPLE to get the book listed and made available for iPad users in the iBook store at iTunes.   I will be working on getting “Living with Epidermolysis Bullosa” very soon on the KINDLE as well as the publisher is also working to get that on iTunes, I should hear something about it before the end of May.   I am still working on my book about Nicky’s life with EB which is sure to raise a few eyebrows. It probably won’t beRead More