On my first birthday I was diagnosed with Multiple Hereditary
Exostoses (MHE for short). I have benign tumors growing on a lot of the bones in my body. They are on my shoulders, my legs, my fingers (big time), my arms, my ankles, my ribs and my hips. My finger joints get very stiff and it hurts sometimes when I write. The strange thing is whenever I hit my hand, I seem to get another bump! A tumor in my left hip blocks a lot of my movement. I can’t bend down to tie my shoes, or sit on the floor, and I have trouble walking up and down stairs. The tumors in my legs make them get weak and numb after I   run for even two minutes, or if I walk for too long. It’s even hard for me to trick or treat on Halloween. I have to stop after just a few houses!

The only time I have a problem in school is in gym and walking up and down the stairs. We have a lot of stairs in my school. I never wanted to tell anybody what I have, but this year I was having so many problems doing gym and even sitting on the floor, that I had to tell my teachers. My doctor, who is really nice, gave me a letter and form for the school nurse, explaining what I had and telling them that I knew what I was able to do and they should listen to me when I said I couldn’t do something. Once my teachers knew they were really great, and they would give me a chair to sit on during assemblies when all the kids had to sit on the floor.

The only friend who knew I had this was Ally, my best friend since we were 2 years old. I didn’t want to tell other kids because I was afraid they’d make fun of me or not want to be my friend. It made me feel brave and lucky when I read some of the other kids' stories on Band-Aides, though, and it made me start to tell kids at school that I have tumors on my legs that make it hard for me to sit on the floor. Recently I’ve told six more of my friends and no one made fun of me. One even said I was lucky  because I got to sit in a chair at assemblies!

Next month I am going to have my first operation. I’m going to have staples put in the growth plate in my left leg because my leg is crooked and this will straighten it. They are also going to remove a big tumor on my leg. I’m sort of scared, but I’m going to get a lot of attention and ice cream – my favorite!

Next year I’m going to Middle School and that should be fun. They don’t have so many stairs there (I only saw three). I might be in the adaptive gym class because gym is going to be very, very, very, very hard! They also have great ice cream there! 

                                            Thanks for visiting, Nicole