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 →

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 George Bailey kisses that stairwell knob, rediscovers Zuzu’s petals, and his brother flies in a blizzard to help him while his friends bring money to raise funds so he won’t go to jail. “A toast to my big brother George: The richest man in town” Harry muses at the end of the movie. Yes, George was rich, but not in money. Earlier in the movie, trying to save the Building andRead 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 wonder how I faced them all without my family’s help. As a matter of fact, I had no help for the most part. My mom, bless her heart, and thank my lucky stars, was there when Nicky was born and stayed until Nicky was about 6 weeks old (my family lives in Italy), later my MIL came to help for about a week because I was going out of my mind.Read More →

If there is one thing my parents (seen here in a photo shortly after their wedding in 1957) instilled in me at a young age is to be weary of friends. My mom and dad didn’t have many friends, but those they did have were really, really great; however, to sort out the gems from the fakes was not an easy task. Both of them had told me stories about how they were hurt by friends in many different ways. Also, just because someone is related to you, it does not mean they care. My mom’s brother and his children are a prime example of this. I even tried over the years to establish a line of communication with them, which worked at times, and provided the opposite effect on others. When my mom’s sister (my GodMother, my middle name is her first name, I loved her dearly) died unexpectedlyRead More →

As some of you may or may not know, my son Nicholas was born with a rare and incredibly painful skin disorder called Epidermolysis Bullosa, the Recessive Dystrophic form. He will be 16 years old in a couple of weeks. A photographer, a dear friend that I met at the College I am attending, wants to make a difference and help the cause, we need a cure and we need it NOW! She started photographing Nicky’s life and him living with EB in an effort to make a difference. This is a project that may take months to finish. She is photographing Nicky’s bandage changes, him at school, at the doctor, at the hospital and in whatever situation you can imagine to help gain a broader understanding of what his life is like. She has started a Facebook page for this project where she is sharing her thoughts and herRead More →

I always found it ironic that the last day of EB Awareness Week falls on Halloween Day. After all, for many EB Children and Adults, being covered in gauze is a daily routine, not a once-a-year costume. I further wish I could say that I liked Mummy costumes or that I would ever dress myself or any my sons like that, including my son with EB, but I often felt a bit uneasy about it. No thanks. I hate gauze. Really, I mean it, I HATE gauze. Gauze to me, and more so to my son, represents that thing that we have to cover wounds with. Those nasty, painful, bloody wounds that make my son’s life miserable. They represent what we hate the most about the condition, the time we have to spend unwrapping, medicate and rewrap every single day of our lives. We can never get away from it, never takeRead More →