I am 66 years old. I have NF1 and it causes bouts of depression, but I deal with that. I am a fortunate man. I taught school for 35 years having earned my Bachelor’s and Master’s degrees. I am married with no children.
By Cristina Kline
“Cyclopes, one-eyed monster, Hunchback of Notre Dame!”
These are a few names I would hear throughout my school-age years. Kids can be mean, but being a kid myself at that time I didn’t understand. I played it tough. I pretended it didn’t bother me. I was strong. Those were just words but you know what? Words hurt. I’d cry in secret when nobody was watching. I wouldn’t tell my friends or family what I was going through and how it affected me. I had to be strong for them. I knew if I told my family they would suffer too. So, I kept it to myself. I kept it to myself for many years.
I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was two years old. I am now 31 years old.
I was diagnosed with NF1 as a baby; I don’t know exactly when, but I’ve known as far back as I can remember.
I have a large tumor on my neck/right cheek near my ear, with less than half a dozen smaller fibromas over the rest of my body that only just started to appear within the last few years.
On April 5, we lost one of our long time NF Endurance alumni athletes. John James Sullivan Jr. was 43 years old. Beginning with the Long Beach Marathon in 2005, he was a huge supporter of the Children's Tumor Foundation and the NF Endurance team.
John’s brother, Joe, shared with us some more about his brother, and the letter from John detailing the legacy he hoped to leave:
Brandon was diagnosed with NF at 6 months. It has caused his left bone to be bowed and he has had multiple surgeries that resulted in amputating his leg. His NF also caused his speech to be delayed, as well, which he goes to speech therapy for.