Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB, let alone parents of kids with other disabilities, but I welcome questions about Nicky. I want to help shape the perception that anyone might have about people with disabilities. IRead More →

What I am watching I know I am extremely late to the party, but by the time I heard about how fabulous this show was it was too late to start watching from the beginning. Looking for something to watch right after Christmas after Outlander ended I saw that Downton Abbey was available to stream on Amazon Prime and I got hooked from the very first episode. I love the period it entails, right around WW1 and after, the fatherRead More →

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met. Some of the hardest losses we experience as human beings are those involving children. They go against nature.Read More →

August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far fromRead More →

I am often asked how I moved to the US, what happened that made me leave my country, if I fled, escaped or what. The truth is not so clear cut, not exactly that simple. I didn’t wake up one day and decided: “I am moving!”. It was a succession of events. Let it be known, however, that if I had had to face the laws that are in place today, I would most likely not had been able toRead More →

In this world full of alternative facts, here’s some real facts about me. I will do one about Nicky too sometime!!! 🙂 1. I lived in 2 countries and in 4 different states – Italy & USA -New Mexico, Texas, Arizona and California. I grew up in Italy, and my heart is still there. 2. Except for a one-year and a half period where I was a ‘divorced mom’, Nicky never had a babysitter again. Connor NEVER had a babyRead More →

Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.  Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it. As a special need mom, I’ve had experiences where I had to fight like anRead More →