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My name is Cole Rutter. I am 12 years old. When I was only a few weeks old, I developed café-au-lait spots all over my body. They looked just like birth marks, so my parents were not too worried. But within a year, my doctor started measuring and charting my “birthmarks.” When I was two years old I was sent to Children’s Memorial Hospital, where I had my first of more than a dozen MRIs. That first MRI showed that I had an optic glioma. An optic glioma is a type of tumor that grows on the optic nerve. My tumor has remained stable, but these types of tumors can cause blindness. I was officially diagnosed 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, brain tumors, high blood pressure, headaches, cancer, learning disabilities and severe chronic pain. NF is the most common neurological disorder caused by a single gene. It is a highly variable and a progressive disorder. NF has affected me in different ways. My leg muscles are not very strong so it is hard for me to run fast or jump. I have scoliosis and wear orthodics in my shoes to help my back and make my legs stronger. Like many children with NF, I have ADD. I have high blood pressure and take medication every day so that it doesn’t get too high. I get a lot of headaches and many times, my skin itches. All of these are caused by my NF. But of all the things that NF can do, I am most afraid of the tumors that I might get. A few summers ago we learned that I had a tumor on my jaw. NF can cause tumors to grow anywhere in the body. It looked like I had a giant gumball in my mouth. I was lucky. My tumor was removed and so far there is no sign of it growing back. I also may 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 others 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 like to do. I love to play sports, especially baseball. I am involved in both spring and fall baseball and routinely “sneak” to my basement to work on my pitching every chance I get. There are many things about having NF that are actually fun. For example, I am very excited about being an NF Hero and being able to go to the Rolex 24 Hour race in Daytona, Florida. I will get to spend time with other kids that have 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” are written on the side of the car. Right now, there is no cure for NF. The Children’s Tumor Foundation gives money to scientists who can 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! Please take a moment and visit www.CTF.org to learn more about NF and then become part of our "Crew" as we race to Daytona. |
