I was diagnosed with neurofibromatosis as a young child, when my pediatrician noticed that I had multiple café au lait spots. However, NF only started to become real for to me in middle/high school when I started developing multiple neurofibromas. This is when I experienced my first struggle with NF, as I was bullied because of the visible nature of the fibromas. I had a period where I hated that I had NF, feared what the future may bring and wondered, “Why me?” Looking back, I am now grateful for these experiences as they made me a much stronger person and taught me to be compassionate to others who are struggling with life’s circumstances and those who may be outsiders in today’s society.
My second and deeper struggle with NF occurred when my daughter Genna was diagnosed with NF; at age 6, she was found to have multiple brain tumors. My wife Kristin and I watched our beautiful little girl struggle through surgeries and multiple rounds of failed chemotherapy. There were moments of uncertainty during those years when we did not know if our little girl would survive. These uncertainties brought back some of the fears I had experienced as an adolescent and led to us becoming involved with the Children’s Tumor Foundation. My family’s involvement with CTF and the NF Endurance team for the last 14 years has been a source of strength for us through Genna’s medical uncertainties. Thankfully, Genna has grown up to become a strong young woman who is an awesome example of someone thriving in life despite of the countless hurdles NF has put in her path.
My wife and I have learned to advocate for me and my daughters by spreading awareness about NF. I strongly believe that while having NF has been a difficult journey, it has taught me to push forward and persevere through whatever life may throw in my way and has truly made me the complete person I am today. We have run over a dozen half marathons for the NF Endurance Team as the G-foRce! (in honor of our girls’ mightiness) and we hosted Coffeehouse For a Cure fundraisers in our local community for many years. I would advise anyone who has NF to reach out to others in the NF and CTF community whenever you are in need of support.
David Camiolo, 49 years old, lives with neurofibromatosis type 1. He is a CPA/Senior Tax Director at a defense contractor. David lives in Warren, NJ with his wife, Kristin, and his daughters who also have NF1, Genna and Rosie, and his son Andrew.
My [multi-focal] brain tumors led to struggles in school, and made me socially awkward, which I hate because I’m a people person, but I have learned that there are people that will accept me for who I am despite my medical challenges. In terms of school, I have always worked hard to overcome my challenges, and have succeeded greatly.
Meeting lots of great friends who are a support for each other and for me through the difficult times has been one of the unexpected positives of my NF experiences.
My philosophy is ‘Stay positive, be happy; you are stronger than NF!’ On tough days, I remind myself of my favorite scripture verse, “I can do all things through Christ who gives me strength” (Phil. 4:13), a reminder I wear on a bracelet every day.
Genna, 19 years old, lives with neurofibromatosis type 1. She is in her second year of community college studying Early Childhood Education, participating in clubs, and volunteering in the summers at a family camp for sick kids up in Maine.
A lot of the people [I have met] and the experiences I have had are because of NF. I have a stable low grade glioma and a plexiform, but I see NF not as big a deal as people think, I can live with it.”
Just like my sister, I believe you can be whatever you want to be, keep dreaming—you can do whatever you set your mind to.
Rosie, 15 years old, lives with neurofibromatosis type 1. She is a flyer for her high school cheer teams and practices aerials and other circus arts for fun.