My name is Genna DeBlasio I am 14 years old and will be 15 in a few weeks.
When I was 3 years old I was diagnosed with Chairi Malformation, and I was very lucky with the outcome. I never had to get surgery, and really never had it that bad. For that I am very lucky!
While I only came for MRI's and checkups this place made 3-year-old me feel at home, and I am so grateful for everyone there.
I am personally committed to Rare Disease Day’s efforts to improve knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. Since I was so lucky I want to help others who are experiencing this disease.
For my Birthday instead of giving me a gift, please donate to the cause to help families going through the process. Will you help me?