Hello, my name is Isabella Trivisonno, I am 22 years old, and have had to overcome many obstacles since a young age. Having been born with a Craniofacial Syndrome, Crouzons, a rare syndrome that affects only 1.6 people in every 100,000 and is caused by a genetic mutation.
I have spent the majority of my life as a patient of the Montreal Children’s Hospital. The first 19 years of my life were filled with lots of pain, fear, surgery, disappointment but also many accomplishments. To this day, I have had 42 surgeries, some minor and others extremely intensive but all were necessary to get me to where I am today. I can vividly remember the pain that came with all of them and it was really hard for me when I was younger. With time, however, as I grew older, I understood more and more about my condition and why I had to go through all of this. Due to my condition I suffered from many issues, but the one thing that was the hardest to accept; was the fact that I was not able to breathe on my own.
For years, I had to rely on a tracheotomy to do what everyone else takes for granted, breathe! The doctors performed the tracheotomy when I was only 8 months old. At that time my parents were told that I would only need it for a few months, but those months turned into 19 long years. When I was 8, I couldn’t take it any longer and I wanted the trach removed. I was willing to undergo whatever surgery necessary to be able to breathe like everyone else. I dreamt about being able to breathe like everyone and for a few years I was convinced that my dream would always remain a dream.
In 2011 doctors told me there was a surgery they could perform to make my dream come true. That surgery turned into two, the last of which took place in May of 2012. In January of 2013 my dream became a reality and I was able to breathe on my own.
It is the best feeling I could ever ask for!
MAKE A DIFFERENCE
The treatments, surgeries and research associated with my case and that of other children, requires time and effort, but most of all it requires funds. The funds are what enables doctors to continuously explore and find new ways to improve their technology. Organizations such as the Children’s Smile & Joy Foundation (CSJ Foundation) contribute to raising such funds. I truly believe that with the generosity and involvement of the CSJ Foundation, children with my syndrome will definitely benefit from the advanced research and technology made possible with their fundraising.