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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 theRead More →

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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 inRead More →

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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,Read More →

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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 thisRead More →

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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 placeRead More →

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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 whoseRead More →

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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 skinRead More →