Fiona’s Hopeful Tigers
The tiger is an animal that represents courage and strength, so I decided to name my team this year Fiona’s Hopeful Tigers. I think it is a good name because people with NF show courage and strength every day of their lives, just like tigers. My name is Fiona Reid, I am 11 years old, and I have Neurofibromatosis Type 1. I was diagnosed with NF when I was 19 months old. I have tibial dysplasia in both legs, which means my leg bones can fracture easily and break. I wear braces on my legs to protect my bones. I have a large growth in my chest, and I have MRI’s a lot to monitor the growth in my chest and to check for new growths. A few years ago I went through chemotherapy at Dana Farber to shrink the growth. It was hard because it made me nauseous, I did not want to eat, and I felt weak and tired. I also have scoliosis and had a surgery when I was five years old to put a rod in my back to help my scoliosis. Every six months, I have a surgery to lenghthen the rod in my back. I have also had several surgeries to put new rods in my back. Those are big, painful surgeries. The most painful part is having surgeries, staying in the hospital, and having to move my back after a big surgery.
The other hard thing about NF is the emotional pain. Not knowing when the next MRI, surgery, or doctor's appointment is makes me very nervous. I am always thinking in the back of my brain that it could be coming. I also learn differently because I have NF. I am constantly pulled out of my classroom and work with a lot of teachers. Sometimes I miss what is happening in the classroom. My teacher Ms. James knows I worry about missing out and never does fun stuff unless I am in the classroom. She is the best and understands me.
Sometimes I think about what if I didn't have NF. It would be nice to not have to worry about when my next doctor’s appointment is, MRI, or surgery. I might not have to be pulled out as much from my classroom, and my life would be different and easier. For example, if I am wearing shorts, sometimes people stare at my leg braces and this makes me feel uncomfortable and I hate it. I wish people understood more about differences in people, and how nobody wants to be stared at. If people stared at you, you would feel uncomfortable. So why are you staring at people with differences? People should know better!
Something I want people to know about NF is that it affects everyone with it in a different way. Some people have a mild kind, but some have a more severe kind. Another thing is that it's not something that you hear about as much as other conditions. Most people wouldn’t hear about it in their whole lifetime. For people living with it, it is a daily problem that can cause so many problems. A wish I have is that more people understand NF so I wouldn’t feel so alone.
Rectenly, I noticed that so many people wear AFOS and SMOS, and they can’t wear shoes that most people wear. I have been working with my uncle to reach out to shoe companies to ask them to have extra wide shoes so people with leg braces can comfortably wear these shoes. It is unfair that people with leg braces don’t have the same choices in shoes as everyone else, and I am trying to bring awareness to this issue.
Since I was a baby, my parents took me to the Steps2Cure NF Walk in Wakefield. The last two years, I walked the whole course. This was hard for me because I usually need lots of breaks when walking. It is important to walk the whole distance to raise money for NF Northeast. I hope this year, more people than ever come and we break a record of raising money! I would like to get more involved with NF Northeast myself to raise money and awareness. It is a wonderful organization that makes me feel better about having NF. Thank you for reading about my life.