Jaxon a.k.a. "The Legend"

Jaxon's Story

To whom it may concern,

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My name is Ryan Dee and I am writing this letter regarding my son Jaxon. In February of 2020, Jaxon was diagnosed with a rare neurological disease called Friedrich’s Ataxia. FA, as it is known, is a disease that is non-curable and there is currently no treatment for it. This disease is at the cellular level and affects the brain which in turn affects equilibrium, balance, and motor skills function, and unfortunately is terminal. For an idea, the closest thing I could relate it to would be ALS.

Before FA, Jaxon was your typical kid. He loves sports and being outside. He played soccer, and basketball, was an awesome skier, and was always up for an adventure going camping, hunting, or fishing. He loves his dogs and spending time with them and is an amazing big brother to his younger sister Ava and an even better son to his mother Nicole and me. Everybody loves Jaxon, he is kind and gentle and always puts everyone before himself. When people meet Jaxon, he makes an impression. He is just a great guy to have around. He is very perceptive and somewhat quiet, which makes him funny because he is always paying attention and keeps you on your toes.

Jaxon is currently about to turn 16 in May. He is a Sophomore at Brighton High School and a great student and worker. A fine example of this would be his determination and dedication to not let FA hold him back and joining the wrestling team last year. Despite all his hardships and limitations, he made it to every practice and every match and was able to Letter in Wrestling at the end of the season. He is a true inspiration.

As far as Jaxon and his condition go, I want to say it was around 2017 when we took Jaxon for an annual well visit to his pediatrician. During that check-up, she noticed a curve in his spine which ultimately led to Jaxon being diagnosed with Scoliosis, and from that day forward started to notice something was off. We did and currently are doing what we can to assist in that area. Jaxon wears a back brace to bed at night and it is painful and difficult to sleep at times. I bring the Scoliosis up because this is what led to his diagnosis with FA and is somewhat of a precursor to the disease. It was the fall/winter of 2018, and I noticed that Jaxon was having difficulties on our hikes with the dogs. I would turn around and he would be on the ground. Walking in rough terrain was becoming an issue. Moreover, that winter, when skiing it was like he had forgotten how to, and Jax has been skiing since he was 3. At any rate, we told the doctors about what we were noticing and were referred to a Neurologist at Shriners Hospital in 2019.

The Doctors ran tests and made some assumptions and the Neurologist said she had a feeling on a rare condition known as Friedrich’s Ataxia. Having no idea what that meant or what it was we were asked not to research until it was confirmed. Which I might add was a funny way to put it since that was all but impossible for my wife. It was the worst day of our lives, and it wasn’t until a few months later that it was officially confirmed to be FA. FA progresses at different rates and has to do with the number of genetic repeats in your DNA. Unfortunately, Jaxon’s count appears to be relatively high, and his condition has steadily been progressing. He officially started to use a walker to go to school at the beginning of last year, the beginning of H.S., and the was a rough day. We are taking it one day at a time and trying to live each day to its fullest potential.

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These programs provided by foundations such as Sportsmans for Heros have been instrumental in the mental and physical well-being of my son Jaxon. The opportunities provided have kept him active, given him a positive outlook on life, and a newly found outlet for meeting new people and like-minded individuals, aka friends and newfound family. His love for the great outdoors has always been our greatest bond as a father and son and through these programs, it continues to thrive and flourish; for which I am eternally grateful.

If you would like to learn more about this dreadful disease here is a documentary film about a few young men that have it. One used to be a competitive cyclist. It's called “The Ataxian.”

https://www.youtube.com/watch?v=Bi7rF37Gqic

I appreciate your time and consideration for my son Jaxon. The kindness and generosity given and shown, have meant the world to my boy and me………memories for a lifetime!!

And in the end, that’s all we truly have.

Sincerely,

Ryan Dee