Stories of NF: Kaiden D.

Did you know that the name Kaiden means fighter or warrior? Even though I am only 9, I have been a fighter my entire life. On April 25, 2016, I had to have my leg amputated due to complications with NF. Losing my leg was very hard for me and everyone in my family. We knew that once the surgery took place, things would never be the same again. Before my surgery, basic things such as walking, running, skating, wearing socks, or even getting in the shower were very painful. I could not even make it through an entire school day wearing a shoe on my right foot. Every step I took, I was in awful pain. But, we were right to think that our lives would be different after the surgery. So different, in fact, because I am now pain free! I can walk, wear socks, take a shower, and recently, while in therapy, I learned to run! I ran for the first time as a 9 year old and it was the best feeling in the world! (My mom even cried!)

Now there is so much more that I want to do, like learn to ride a bike and play tennis. I know that I would have never been able to do those things with my old leg. That is what keeps me motivated. I remember what my life was like before and how I never played with other kids because I couldn’t keep up. Now, they can’t slow me down!

My family and I work hard to spread the word about NF. In the year since my amputation, together my mom and I have participated in public speaking engagements about NF1 in places such as Valdosta State. In addition, we have written a children’s book (scheduled release November 2017) about children with disabilities and physical differences. We participate in the Atlanta NF Walk every year and have even earned recognition as a top fundraiser.

If I could tell other fighters anything, I would tell them to try and have a positive outlook on life. Having NF is tough- there are so many ways that NF can affect you physically, which is why it is important to be as strong as you can mentally and to always find joy in your situation or circumstance. Right now, there is no cure but that doesn’t mean there won’t be one soon. I fight for NF because hopefully later on other kids won’t have to.