I’m a tad late to the party but I could not let today pass without wishing you all a Happy Rare Disease Day!
A rare disease is a condition that impacts less than 1 and 2,000 of us.
Did you know that between 3.5-5.9% of us have a confirmed, diagnosed, rare disease? We are 1 in 2,000. Some of us are 1 in 200,000, some of us are 1 in 2 million, or 1 in 200,000 million.
There are 6,000 known rare diseases and 72% of those are caused by a genetic mutation.
Our mutation comes from the POLG1 gene. It is more common among mitochondrial deviations- it is suspected that 2% of us are running around with a POLG1 mutation and many of us don’t even know it.
Being mutated is no cause for alarm! Like all evolving beings, we all carry genetic mutations. W
e are all our own genetic X-Men. It’s when those mutations become disease-causing that things go awry. And because families share the same genetic soup, disease causing mutations can be far reaching, impacting multiple generations with devastating results.
My beautiful, rare Loves:
The crazy thing within our family is that Rare is that it has made us…….Rare.
This blended family huddles when needed. Holds each other close, rally’s, never leaves an event without saying ‘I Love You’, cries openly, and hugs a little longer.
But we will all say, resoundingly, that being rare sucks. We have endured life-changing losses, ugly cried and cursed the heavens for this sucky genetic lottery. If we are the X-Men, I’m waiting for my proverbial Wolverine.
Rare Disease Day is about families like us. Families searching a cure; collaborating, advocating, fighting for a cure. There are 300 Million of us……suddenly rare is not so rare.
I’ve been writing for a local publication- this young family was fantastic, so fantastic I thought I would share 🙂
“It is not the mountain we conquer, but ourselves,” Sir Edmund Hilary.
It’s not easy to keep up with the Jones’s. In August, Tanner and Tyler Jane Jones will have been married for seven years. “It’s been a busy seven years,” says Tyler Jane. “We are just enjoying where we are right now.”
Tanner and Tyler Jane were high school sweethearts. It was their love of nature and the outdoors that brought them together. They met shooting archery in the Jefferson County 4-H club and have been by each other’s side ever since. Tanner joined the Marine Corps and served our country for four years before being honorably discharged in 2016. Ten days after Tanner left the Marines, he and Tyler Jane were married in Grand Lake.
“My favorite memories always surround us being outside,” says Tanner.
Tanner is a professional rock climber. The love of this sport changed the trajectory of his life and sometimes presented challenges that may have seemed insurmountable. On June 12, 2008, 14-year-old Tanner was climbing in Morrison. It was a hot day, and he was finishing up his last climb when he fell. Tanner suffered a severe fracture to his right leg and was piggybacked down the road. He went on to graduate from Chatfield High School, met Tyler Jane in 4H club and went on to enlist in the United State Marine Corps.
Tanner’s leg never healed properly but he learned to run through the pain when he passed the Marine Corp Physical Fitness test. Some might say the Marines instilled Tanner’s grit and resiliency, I believe it was there all along.
Ongoing surgeries, infections and an intense lack of mobility compelled 27-year-old Tanner to make a life-changing decision. On January 11, 2021, doctors amputated his right leg.
Since that time, Tanner has climbed Cotopaxi, a 19,400-foot volcano in Ecuador with other amputee athletes, and in 2022 he competed in the Para Climbing Nationals and the World Cup for Team USA. Tanner placed 7th in his division, less than a year after he decided to part with his right leg.
It’s a lot of life for a 29-year-old, a life best lead with an amazing partner, Tyler Jane. “In seven years, Tanner was honorably discharged from the Marines, we got married, had two babies, we both lost our moms to cancer, and Tanner went through a life-changing surgery. We’re just enjoying our life as a family right now.”
Life as a family includes two busy young kiddos; Bode (3) and Hadley (8 months). Bode is a busy toddler who climbs on everything, loves playing with his chickens, tractors monster trucks, and trash trucks. Bode has started climbing with his dad. Tanner strategically places gummy bears on handholds to keep Bode motivated. Hadley is a smiley baby who loves her dad and playing in water. We’re pretty sure she’ll join her brother climbing in the next year or two.
The Joneses’ are also raising fur babies. “Cora is our 7-year-old silver lab. She is our first child. We got her one month after we were married. She loves playing fetch, swimming, and eating everything and anything. The kiddos are her walking snack machines. She also enjoys catching a quick snooze in the sun,” says Tanner.
Pancake is the family cat. She is happiest outside chasing squirrels with Bode. The family chickens, Buttercup, Blossom, and Bubbles, complete this family. Buttercup is pretty attached to Bode. In fact, he’s the only one who can hold her. “The rest of us appreciate their eggs.”
Having grown up in Colorado, Tanner and Tyler Jane have many fond memories of this area. In March of 2020, they brought the house that Tyler Jane lived in the first two years of her life. “It’s been fun to bring our babies home to the same nursery that Tyler was brought home to and to make her childhood home our own,” says Tanner.
In December 2021, Tanner graduated with a degree in Recreation Therapy. He now works with the National Sports Center for the Disabled, guiding rock climbing, rafting, and ski programs. He recently started a competition team for individuals with intellectual disabilities in the Front Range.
Tyler Jane works in the health insurance vertical. She recently piloted a project focused on new moms, providing support during their fourth trimester and as they make the transition back to work with a new baby. She is passionate about women’s health and advancing how we as a society support new moms. Before she became a mom herself, Tyler Jane was the 2013-2014 Miss Rodeo Jefferson County. Perhaps that’s why she moves through these changes with ease, this isn’t her first rodeo.
Resiliency, determination, and a deep commitment to each other has grounded Tanner and Tyler Jane through challenging times. Tanner’s surgery has been life-changing. He no longer lives in pain and is able to embrace once again the physical activities that bring him joy. As a gifted rock climber, he is a leader in the para community, helping others find their own passions and push themselves beyond their limits.
“My favorite memories always surround us being outside. One of our most recent memories was rafting with Ty, Bode, and my dad for Father’s Day.”
When not summiting Cotopaxi, competing in the World Cup, or providing support to new moms, the Jones’ can be found throwing the ball for the pup at the park, enjoying the trails at Stanley Lake or catching bugs with Bode; outside, together as a family.
Neighbors of Northwest Arvada extends a sincere thanks to Tanner and Tyler Jane for sharing their story. You are an inspiration to us all; a story of love, hope and a reminder to us all that the climb is part of life; grit, determination and gummy bears lovingly placed on the handhold can make all of the difference.
We no longer stay in touch. But I did, indeed, marry a skier.
My favorite days with Hubs are on the mountains- it is my happy place, it’s his happy place, and I am so grateful we share this. Mountain vistas and powder are a love language.
We had dreams of bringing little skiers into this world.
We did not bring little skiers into this world.
But we did get nephews……poor little nephews who had absolutely no idea the skier expectations from their aunt and uncle.
And then I realized that teaching kiddos to love skiing is hard. Really hard. It’s filled with early mornings, cold hands, sore feet, hauling gear and thoughts of ‘why are we doing this?’ from both adults and kiddos.
And then they get it, just when everyone is about to give up; the feeling of flying, the magical ‘shoosh’ down the mountain, the cries of ‘whhhhooooopppppeeeee’……and your Auntie heart grows ten times; ten times by ten.
My auntie heart grew ten times this weekend. Our youngest nephew, the one we weren’t quite sure if he would love skiing, fell in love with skiing. Like any love affair, this process was fraught with uncertainty, a little fear and finally, joy.
Some of this may have been my fault.
Youngest Nephew (YN) and I were skiing on Saturday- it was time for lunch and we started making our way back to the house for a sammie. The road back was a blue run aptly named ‘Home Again.’ Another skier told me it was a mellow blue, something we could easily manage.
The first couple of turns were just fine and we slowly made our way Home….Again. We stopped as the road curved and the slope seemed to disappear, meaning it’s a bit steep. Holy Schmoly, not only was it steep but it twisted sharply to the left; over the curve was the ski area boundary and a significant drop-off.
I may have whispered an F-bomb or two.
The nephews call me Hehe, a nickname I love but when YN whispered, “Hehe, I’m kinda scared.”
I may have whispered another F-bomb.
“Buddy, I get it. But I am not going to let anything happen to you and we are going to get down this.” I told myself to pull it together and placed YN between my skis. I made a giant wedge from hell and we slipped down what was supposed to be ‘a road’.
We got down the first pitch.
“I think I need a rest,” said YN. And so we rested for a bit.
Home Again continued, slip, ski, rest, thank my doctor for a great new knee, kiss my gigantor quads. At one point we sang “You are my Sunshine” which was Samantha’s song, which made me cry, so we rested a little more.
It took us an hour to get Home Again. At the end, the road finally mellowed a bit and YN found this tremendous confidence. He was skiing, stopping, singing, and giggling. We got to a fork in the road and took a rest. “Buddy, I am so stinkin’ proud of you. That was hard and scary, and you did great, bring it in.”
We exchanged a big bear hug. “Yeah, that was hard but kinda fun. I knew I could do it.”
He skied to the house just in time for Hubs, Popsie and his big brother to see his amazing finish. They cheered as he came to a perfect pizza stop. He casually took his skis off and went inside for a turkey sandwich.
I took my skis off and collapsed in a ski bank. Popsie found me later, “You okay, Hehe?”
We did not do Home Again, again, instead we did laps on a wide, very open blue run until the lift closed. When the slope mellowed, YN would tuck and put his arms behind him. “Whatcha doing, buddy?”
“This is how all the fast skiers ski……..Whoooopppppeeeeee.”
There are moments in life you will remember forever. This was a moment; when YN and I made our way down Home Again.
I sit on the floor surrounded by old magazines, a pair of scissors, puffy paints, glitter, glue stick and stickers and create a vision for your next year.
I know. Super Cheese. I spent three hours today Vision-Boarding my next 365 days. And according to my vision board, 2023 is going to be amazing.
I say the above with about 50% jest. I do honestly take this time to think about what worked and what didn’t work last year. And although I might not change, I ask myself what I want to focus on in this next year? What can help me get there? I pull out quotes, memories, reflect and dream.
It’s a lovely ritual- a needed break from the Christmas frenzy.
I always finish the holidays slightly askew.
My life is strewn about like remnants of ribbon and wrapping paper, munching on a green sugar cookie in the shape of a sock, wondering where things went wrong after Halloween.
This is my time to reflect and regroup.
For me and my tribe.
From a major surgery- to finishing 2022 in my happiest place, knee deep in powder and pain free.
To our community recovering from a fire that tore through our town
For a friend reeling from an unfathomable loss
It takes time to recover. It takes reflection, a focus on healing, an eye on hope. A belief that our worst times will not define us.
Recovery takes our loves raising us on high.
And raising our loves in return.
It took three hours, 8 magazines, and a bottle of glitter glue to pronounce, reveal and reflect on this year and bundle it into some sort of package.
Sometimes recover is peppered with platitudes; ‘bounce back’, ‘stronger than ever’, ‘overcome’.
But what if recover is coupled with time, relax, regroup, meditate, lean in, search, listen, embrace imperfection.
2022 taught me a lot. I lift my head above the garland, tinsel, leftover sparkle and greet the New Year with an extended hand
To the opportunity to recover and the gift of another year.