My name is Kevin Martin. I am 12 years old. When I was only a few weeks old, I developed café-au-lait spots on my body. They looked just like birth marks, so my parents were not too worried. But two years later, when my doctor started noticing other symptoms too, I had my first MRI and was diagnosed not long after with neurofibromatosis (NF). There are different kinds of NF, but I have NF1. NF1 can cause tumors to grow on nerves anywhere in the body, and can also cause a lot of other problems like blindness, deafness, learning disabilities and severe chronic pain.

NF has affected me in different ways. My muscles are not very strong so it is hard for me to walk. Like many children with NF, I have ADHD. I have macrocephaly, which means my head is bigger than normal. Sometimes my skin itches a lot. All of these are caused by my NF. But of all the things that NF can do, I am most scared of the tumors that I might get from NF.

A few summers ago we learned that I have two plexiform neurofibromas, which are big tumors inside my body. One is about the size of a tennis ball and is on top of my lung. The other is the size of a banana and stretches from my lung up to my jaw. I also have a small tumor in my brain. My parents and doctors tell me that like most NF tumors, mine are not malignant, which means I do not have cancer. But I know that people with NF are more likely than other people to have malignant tumors, so there is a chance mine could turn into cancer. That scares me, so I try not to think about it too much. Also, NF tumors can cause problems even if they are not malignant, depending on how big they are and where they grow.

Although I do not like having NF, I have not let it stop me from doing many things I want to do. I like to play video games. I volunteer at our local humane society. And I am a member of the student council at my school. Also, there are some things about having NF that are actually fun. For example, I like being an NF Hero and going to the Rolex 24 Hour race in Daytona, Florida. I spend time with other kids with NF, meet the race car drivers, sit in a race car, and have a great time just watching the race. We have a car with the logo of the Children’s Tumor Foundation, and the names of me and other “NF Heroes” written on the side of the car. There is a picture of me at the very top of this page sitting in the CTF car before the race.

Right now, there is no cure for NF. The Children’s Tumor Foundation gives money to scientists who do things like test medicines that might stop the tumors from growing, or stop other problems that come with NF. I want to help find a cure so I don’t have to worry any more, and no one else has to suffer from NF. I am hoping you will join my efforts, make a donation, and help us find a cure!

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