I was watching an interview with Meredith Viera yesterday on the Dr. Oz show and she said several things that I could completely resonate with, and the one that I could relate to the most is how she felt everyone’s Life was about “Priorities”. It’s true, isn’t it? Sometimes I wonder how different my life would be now if my Alex had been born alive and healthy: Nicky would never had been born because we had no plans of having children this close apart, so the EB might have never played a part in my life at all. Truly, Alex’s stillbirth and Nicky’s birth completely changed the way I felt about motherhood, life, work, what’s important and my priorities. But I think what effected my priorities more, which I see in other people’s lives as well, is the amount of help I got, or rather, I didn’t get, the amountRead More →

Ever since that dreadful, beautiful day where I held and lost my son, I felt a strong need to keep his memory alive. This was not an easy task. It was easier at first. People sent beautiful sympathy cards, flowers. Being part of a support group and speaking with other parents helped, but after having Nicky and all that his tough life entailed living with EB, it became rare. Nobody would EVER say his name nor bring him up in conversation, it was all very uncomfortable and weary. Such an unspeakable loss, unspeakable because nobody wanted to speak about it. Which is what prompted me to break the silence. That is why I wrote his story. Even before Nicky was born, there were times where I felt my strength was tested over and over again. Free baby photos, free baby coupons, free baby magazines would continue to flow. The baby section at the storeRead More →

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 →

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 conversation and she opened her little picture album to show me photos of her family members and one thing struck me. Under every photo she had written a quote. But… not any quote. Each quote pertained to the photo. When I came back from Italy I became obsessed in recreating what she did. Over the photo of my sisters, for example, I wrote ‘Be there when people need you’. Over myRead 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 lethal per se: Junctional (Herlitz form) is deadly to the newborn and young. It involves the insides; small intestines, gallbladder, urethra and kidneys along with the nasal, oral, pharynx, esophagus, etc…  These babies commonly pass away within a few weeks of birth, some for a few months, rarely to adolescence. Recessive Dystrophic EB is the other. There are some variants in this form, it can be very mild and extremely severe,Read 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 I met this Doctor a light bulb went off in my head. I made sure his pediatrician did blood tests to check his iron levels and she immediately referred me to him. To him! An expert in EB! I could not believe it. This doctor practiced at CHLA, he was actually a local doctor for us, amazing.  Having a child with a ‘orphan disorder’ makes you deeply, and I do meanRead 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 of 100 photos per blog. So if it’s a post that involves photos I do it here. Yes, I could do it on Facebook, but I refuse. Facebook has deleted way too many EB wound photos and even blocked me for doing so for me to trust them anymore. I wanted to show this photo of a blister that Nicky got recently on his leg (It did go all the wayRead 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, the sister of my grandfather, my dad’s dad. What happened in Maria’s life that was so horrid, so difficult that she could not handle you may ask? I am about to tell you. Brace yourself. But first, I want to explain how and why I was told this story to begin with. In 1998 I spent several months in Italy when Nicky was little because I needed the help ofRead More →