“My name is Yaniry, I am 24 years old, and I was born with neurofibromatosis type one (NF1). All my life, I have been followed by many different kinds of doctors and I had my first surgery in 2009 to remove a large tumor from my nose. However, unfortunately, the tumor kept growing back and I had to have six more surgeries. The last one was in February of this year.
“I also have a tumor on my eyelid and I have been blind in my right eye since I was four months old. In addition, I have learning and developmental disabilities. When I was in school, everyone used to bully me and make me cry, but I persevered and graduated high school with my IEP diploma.
“On May 17, 2016, I had two surgeries to remove a painful tumor from the bottom of my foot and one from my calf. I have a lot of café au lait spots which sometimes make me self-conscious about showing my body or wearing a swimsuit. I also live with nerve pain and sometimes get depressed about my situation, but I feel better when I focus on moving forward and helping others.
“My favorite hobby is drawing and I take weekly art classes. I love arcades and adventure parks and I dream of going to Disney World one day.
“I would like to meet other people with NF and talk with them so that we’ll feel less alone and more like a team; a team that fights, and will one day beat, neurofibromatosis. I know I have more surgeries and medical procedures in my future, but I look forward to the day when I won’t.”
Yaniry Lora, Bronx, NY
