Hello and welcome to my author's page. I am a 53 year old mother of 3 boys, one in heaven and two on earth, ages 20 and 14. I was born and raised in Italy and I moved to the US to study English while I lived with my aunt, and as the story goes... one thing led to another and I never returned. I do miss Italy and my family dearly, we do plan to retire there to be among family. I am a graphic artist, photographer, author, webmaster, blogger and more.
My first son, Alex, was stillborn at full term, at the time it was thought it to be a cord accident, but when my now 20 year old son was born and diagnosed with a devastating and painful skin disorder called Epidermolysis Bullosa (called EB for short) the Doctors then realized EB could have played a key part in his demise. My son Nicky has one of the more devastating forms of EB, called Recessive Dystrophic, so rare only 3 babies in a million are born with it. His skin is as fragile as a butterfly’s wing which can blister at the slightest touch — even from my cuddles. Normal day-to-day life causes constant pain and scarring, which leads to disfigurement and disability, very often resulting in early death.
I created quite an extensive website to share information about this orphan condition you can visit @ http://www.ebinfoworld.com
I wrote a book about Nicky's life which I released in late March 2015. I start the book with Alex's story, which I released separately in an effort to help moms facing similar situations.
Thank you for visiting!