Skip to main content

In My Own Words: Will S.

A young man smiles while sitting at a table.I was first diagnosed with neurofibromatosis type 1 (NF1) when I was six months old, but most of the time I would forget that I even had it.  The only thing that would sometimes remind me were the cafe au lait spots I would notice on my legs or on my stomach.

The reminders became much more frequent though when I started sixth grade and school became very difficult for me. I was told that a large percentage of kids with NF1 have learning differences and I was no exception. I went through assessments and testing and even though I was given an IEP with accommodations, I was still struggling.  I felt that no matter how hard I worked or how much I studied, I wasn’t learning. I was always worried and started to think that this was just how it was going to be. Even though I always wanted to go to a 4 year college, I accepted the fact that it might never happen.

I was losing hope.  But then I got angry. It wasn’t fair that I couldn’t pursue my dream of going to college and working in the Sports Media field one day. I wasn’t going to let NF1 and my learning challenges define me. My mom, dad and I decided that we needed to make a change and that’s when I switched to a school where I could work at my own pace and not move on to the next level until I mastered each subject.  I’m learning so much and really like going to school now! NF1 may create challenges but I realized that as long as you advocate for yourself and have support from your family and teachers, you can turn those challenges into opportunities and not let anything get in the way of how you want to live your life.

Will Schell is 16-years-old and lives with neurofibromatosis type 1.