Jaxon’s story
Mule deer
Jaxon killed one heck of a buck this weekend! Jax has Frederich’s Ataxia which causes progressive damage to the nervous system. Despite this, he’s already taken 2 bucks, a cow elk, and an antelope. He’s quite the outdoorsman and a sharp shooter as we saw this weekend! We had some incredible people on this hunt and we’re so grateful to everyone who made it happen! The landowners were so generous to allow us to hunt their gorgeous ranch. Be on the lookout for Jax’s full story and more pics coming soon!
My name is Ryan Dee and I am writing this letter in regards to 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 in non-curable and there is currently no treatment for. This disease is at the cellular level affects the brain which in return affects equilibrium, balance, motor skills function, and unfortunately is terminal. For an idea, the closest thing I could relate it to would be ALS. Prior to FA, Jaxon was your typical kid. He loves sports and being outside. He played soccer, basketball, was an awesome skier, and is 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 joined 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 goes, I want to say it was around 2017 when we took Jaxon for an annual well visit to his pediatrician and 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 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. 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 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 this year, 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. These programs provided from foundations such as COCO (Children of Circumstance Outdoors) have been instrumental in the mental and physical wellbeing of my son Jaxon. The opportunities provided have kept him active, give him a positive outlook on life, and newly found outlet for meeting new people and like-minded individuals, aka friend and family. His love for the great outdoors has always been our greatest bond as a father and son and with 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. Its called “The Ataxian.”
https://www.youtube.com/watch?v=Bi7rF37Gqic
I really appreciate you listening to my son’s story. Everyone’s kindness and generosity have meant a lot to my boy and I………memories for a lifetime!! And in the end, that’s all we truly have.
