My name is Miranda. I am 7. I have NF1. Having NF1 makes me feel unique. It makes me feel unique because not that many people have NF. I don’t know anyone else with NF. I like to twist on the monkey bars. I like to play goalie, defense and offense in soccer. I am good at school. My favorite thing in school is math. I want to be a veterinarian when I grow up. I like to draw animals like hawks, peacocks, cats and horses. I have scoliosis that makes my back sore sometimes. I have lots of café au lait marks. We call them beauty marks. I have to get a needle poked through my arm for my MRI’s. I see lots of doctors so they can check my NF. People don’t know lots about NF. Other kids think they can catch it from me but they can’t. If I met another kid with NF, I would tell them that it gets better in life and you get used to having NF.
The above was written by my beautiful, compassionate and intelligent daughter. It is the first time she has expressed her feelings about her NF – in her own words. I asked questions and she answered them. She was diagnosed with a missense spontaneous mutation of NF1 when she was almost 5. We were stunned, confused and worried when the diagnosis came to us and had no idea what to expect. We firmly believe that knowledge is power. Thanks to CTF.org and Miranda’s battalion of doctors, we know that it is as much a part of the wonderful person who wrote the paragraph above as any other genetically determined trait. We know how lucky we are that her manifestations have been mild. We know that if we make it something to stress out about, she will stress out about it. If we treat it as a normal part of her life, she will to.
– Miranda’s mom, Jessica
