Fiona’s Team
My name is Fiona Reid, and I am 12 years old. I have Neurofibromatosis.
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. 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 surgery to lenghthen the rod in my back. I have also had several surgeries to put new rods in my back. I have a big surgery coming up in May. I hope to walk this year, but I might still be recovering from surgery.
The other hard thing about NF is the emotional pain. No one really talks about this part as much. 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.
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. 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 disabilitys 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 disabilitys? People should know better!
I have been coming to this walk ever since I was a baby. The last two years, I even walked the entire course myself with my sisters and cousins. This was a big accomplishment for me as I have difficulty walking longer distances. It took me a long time to finish the walk, but I did. It is important to keep raising money for NF Northeast and coming to this walk each year. NF Northeast is a wonderful organization that brings awareness and hope to those affected by NF. Thank you for coming and supporting me and all those affected by NF.