Jax's Story: A Ten-Year-Old Boy's Journey Through Struggles and Strengths Amidst a Life Limiting Disease
Updated: Sep 28
This is Jax's Canavan Disease story, shared through his journey, his strength, and the life he has lived beyond the expectations placed before him.
Hey everyone, I'm Jax, and I just turned 11, which is kind of a big deal!
I was born with a rare brain condition known as Canavan Disease, a type of leukodystrophy. It's a life-limiting disease, and my time here compared to most is short. This condition comes with many challenges, and it takes a whole team of incredible people to help care for me. My biggest supporters are my parents, who have always done their best to provide me with a good life, ensuring I have fun and stay comfortable.
I consider myself a lucky kid.
My disease doesn't define me, though. My mom says I have a vibrant personality and a light within me that many aspire to have. As I grow older, expressing myself becomes more difficult, but I'm still the same person inside. I am a pure soul here to teach others how to find joy in the small things, love deeply, discover their true purpose, and appreciate the world's beauty amidst the noise.
I live a simple life, and that suits me. I can't walk, talk, or care for myself.
Despite everything, I've experienced much and have touched and taught many about life. I know people are striving for me to be whole, but this is the only life I've known.
It's been fun, challenging, hard, beautiful, and painful. I've shed more tears and fought more unseen battles that very few have seen, not even the people who love me most.
I feel I've lived a full life because it's been filled with love. Many people love and care for me. There have been really hard days, but I've also brought joy to countless people simply by being me.
I have personal struggles, but I'm grateful to be here. I often wish I could run around and do the things other kids my age do. However, God has a different plan for me.
I have a unique connection with the world around me and understand the true meaning of life.
There is beauty in my life, even if my time here is short.
I've felt love and connection, and to me, that's everything.
Hopefully, I can inspire many and help people realize what a blessing it is to be here and not take the little things for granted!
I may not be able to talk, but I hope my life speaks louder than words ever could.
"As a baby, I loved milk just like any other baby." I was a chubby baby, with a full belly and two loving parents who spent every chance they could holding me, playing with me, and making me smile.
For that, I was one lucky baby.
I've always loved being outdoors and spending time with people I love.
I love being around other kids because deep down, I'm just like them. I would light up whenever I had cousins to play with.
I've spent more time in hospital rooms than any child should.
I would prefer not to have dealt with a medical team, but I'm grateful for their hard work. Because of them, I've been able to live a better life filled with love, comfort, and so many beautiful moments.
They help make my life as comfortable as possible.
I've seen my parents cry more times than I can count. I hope they know how incredible they are and how deeply grateful I am for everything they've done for me.
They gave me a life filled with love, joy, and memories despite the circumstances we face.
I’ve been lucky enough to visit some amazing places. My parents never let my diagnosis stop us from making memories together. I’ve traveled to Nashville, Chicago, San Diego, Tampa, Clearwater Beach, Yellowstone, Island Park, Montana, Ohio, St. George, and all over Southern Utah.
My parents took me everywhere they went.
Traveling with me wasn’t always easy. Between my medical equipment and all the supplies I needed, every trip took extra planning. But my parents never let that stop us. They simply figured out a way to bring me along.
I’ve dipped my toes in both the Atlantic Ocean and the Gulf of Mexico, but I think I loved the ocean in Florida the most. The water was warm, and I got to swim and ride the waves. I was all smiles when we finally reached Clearwater Beach. Feeling the warm sun on my face and the waves around me made hospitals and doctors feel very far away for a little while.
After a tough winter, I think we all needed that.
Make-A-Wish helped give my family a trip we would never forget. We were greeted at the airport with balloons and a wheelchair-accessible van so I could be part of every adventure. We took a boat ride on the bay and visited the zoo and aquarium, where we met Flipper. The team even signed a book just for me and surprised me with a stuffed dolphin.
But some of my favorite moments were the simplest ones. We spent time relaxing on the beach, playing, laughing, and just enjoying being together.
And Florida was only one of our adventures.
At Duck Creek Village, I rode in a side-by-side, sat by the fire, soaked in the hot tub, relaxed in my hammock, and looked up at the stars with my family. At Sand Hollow, I played in the lake and felt the soft sand beneath my feet. We’ve escaped to Snowbird several times to swim, relax, and enjoy the mountain views.
We’ve also camped at Jordanelle Reservoir, where we stayed in a cabin and spent our evenings watching the fire. I loved listening to the sound of the river. I got to float on a tube and ride in a wagon down to the lake—simple things that brought me so much joy.
Looking back at all of these adventures, one thing stands out.
My parents never saw my diagnosis as a reason to leave me behind.
They just found a way to bring me along.
And because they did, my life has been filled with adventures, laughter, sunshine, campfires, ocean waves, and memories I’ll always carry with me.
Summer has always been my favorite season. On the weekends, my parents would take me to the pool, where I could spend hours floating on a tube. We’d head up the canyon, have dinner by the fire, and spend the evening outside—two of my favorite things.
We also visited Tibble Fork Reservoir, where we’d sit by the lake and enjoy the view. Every once in a while, I’d dip my toes in the water, although I wasn’t so sure about that part. That water was cold!
Some of my best memories were made with my mom. She would pull me behind her bike in my trailer, and I absolutely loved it. We went on countless walks together, and I was her running buddy too.
My mom says one of her favorite memories is looking down at me while she ran and seeing a huge smile on my face. I loved going down hills and feeling her run fast. The faster we went, the bigger I smiled.
I’ve always loved a good movie, music, fireworks, and when I was younger, sledding in the winter. I’ve taken a boat ride on Echo Reservoir, where we got to go really fast—which I thought was pretty cool. I’ve even been to Lagoon and gotten to enjoy a few of the rides.
But out of everything I’ve done, my favorite thing has always been pretty simple: being with my parents.
We’ve had a lot of fun together.
They’ve always done everything they could to make sure that even though my life looks different, it is still a good one.
As I’ve gotten older, the things I’m able to do have become more limited. That’s simply part of my disease. Canavan is progressive, and over the years, my health has gradually declined.
But I still have people around me who make my days brighter.
I really love my little sister. She’s always kind to me, brings me toys, and comforts me when I’m having a hard day. I also have amazing teachers, nurses, bus drivers, grandmas, and so many other people who have loved and cared for me throughout my life. I’ve been lucky to have a lot of people in my corner.
My body has been through a lot.
I’ve endured more pain than I wish my parents never had to witness. I’ve had four surgeries, and my back surgery was by far the toughest. I once broke my leg simply by standing in my stander at school. The doctors had to rebreak it to straighten it, and my mom says it was the worst pain she has ever seen me experience.
There have also been times when my body struggled just to hold on to the nutrition it needed. At one point, I became so thin that I couldn't have my back surgery until I gained enough weight. I needed a PICC line for ten months to help give my body the nutrition it needed and get my weight back on track.
There have been times throughout my life when I’ve lost a lot of weight and my body has struggled, but somehow, with a lot of help, we’ve always found our way back.
I’ve fought some pretty big battles.
When I nearly died at three years old, I fought like crazy to be here.
I came back a different kid—happier, stronger, and ready to experience more of life. My mom says something changed in all of us after that. She made it her mission to give me a good life, have more fun, and make as many memories together as we could.
She still says those years became some of the best years of her life.
People have called me their hero over the years and that makes me feel really good!
But I do know that I’ve fought hard to be here.
I’ve loved people, and they’ve loved me. I’ve made them laugh, taught them things they never expected to learn, and changed some of their lives simply by being part of them.
And whenever my journey here is complete, I know one thing for sure:
I will have left my mark on this world.
I know my time here is limited, but while I’m here, I want to live and love as much as I can. And maybe, through my life, I can inspire someone else to appreciate theirs—to recognize just how much they’ve been given and not take the simple things for granted.
When it’s my time to soar, I’ll rise high. I believe the angels who have been watching over me will be there to welcome me, and then it will be my turn to watch over the family who has spent my whole life watching over me.
If I could leave you with anything, it would be this:
Strive to be a good person.
Help people when they need it. Be there for them. Show up. Forgive people who have hurt you because sometimes the people who hurt others are hurting too.
Don’t spend your life stressing over things that, in the end, don’t really matter.
Be thankful for the things that seem ordinary—walking, talking, eating your favorite food, celebrating another birthday. Play video games. Go for a hike. Ask the girl out. Love your mom. Bake cookies for someone. Smile more. Laugh more.
Have fun.
Love yourself. Love other people. Be brave enough to really live your life instead of getting so caught up in worldly things that you forget what being alive is all about.
I hope my story inspires someone to live fully, no matter what their circumstances may be. Do some good while you’re here. Be grateful for the simple things.
Tomorrow is never promised.
So live. Laugh. Love.
And make your life count.
Love,
Jax
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