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 →

Those that know me, know what a quote freak I am. I draw a lot of inspiration from them and they truly help me in many ways. It all started back in 1993-I was on a flight from New York to Milan, Italy to visit my family and the gal sitting next to me was a beautiful 19 year old girl traveling solo to a modeling shoot with a teddy bear and a picture album. We struck up a conversationRead More →

Ever since the photographer started taking photos of Nicky for her/our photo-documentary about living with EB, a lot of questions about his health have surfaced-I will try to answer them here to the best of my ability. 1. Is his condition considered ‘lethal’. Nicky was diagnosed at birth with Epidermolysis Bullosa, a biopsy was then taken and the result was a diagnose of his sub-type, which is ‘Recessive Dystrophic’. Of the currently known types of EB, only two are considered lethalRead More →

I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing with and I knew nothing about. He was severely anemic. I always gave Nicky iron orally or in his tube, but he was increasingly becoming pale and lethargic. After IRead More →

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit ofRead More →

We are told this often, all the time. Constantly. Aren’t we? No matter what happens, we’re supposed to handle it, no matter how horrible, how difficult, how incredibly hard. Buckle up! Just handle it, God knows best. I used to like this statement a lot, and found it helpful and I still do to a certain extent, but my 100% belief in it was tested and analyzed in depth once I found out the life story of my great-aunt Maria,Read More →

One of my favorite movies of all time is Frank Capra’s 1946 film It’s a Wonderful Life. Even as a child, I would watch parts of it over and over again and be mesmerized by the story, full of lessons for everyone. I am excited that I will be able to sit down once again this Christmas and enjoy it again, and yes, a box of Kleenex will be nearby for the tears that would undoubtedly roll down my cheeks when GeorgeRead More →

If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down. I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the year I spent adoring and caring for my little guy. It was wonderful to finally be a mom, but the challenges I faced were so compelling, at times I wonderRead More →