On a chilly morning in Wyoming’s Teton Range late last month, I pulled on a pair of dusty, well-worn boots and ventured into a glacier-carved gorge called Death Canyon. After leaving my 3 year old son with my parents at our cabin in Jackson, I was keen to attempt the hardest and longest hike since a 2017 trip to Glacier National Park, there is a baby and numerous ankle injuries.
My left ankle is on the block, with several surgeries – including a reconstruction – scheduled for early January. Its current shoddy condition didn’t stop me from running the Jackson Hole Half Marathon on September 25, marking halfway through my quest to host a race in all 50 states.
Amazingly, the ankle also persevered through Death Canyon. The 16.3-mile trail includes 5,100 feet of elevation gain, ascending the side of the canyon before offering sweeping views of the Teton Range and Alaska Basin. The hike is fantastic in itself; this makes my short list of all time favorites, although i have hiked extensively in over a third of the national parks in the US
Still, I was unprepared for the exhilaration I felt upon reaching the ditch. At that moment, the emotions that had been building up for three years escaped from me and into the canyon under which I stood. The date was September 28, just two days after the third anniversary of my sister Taylor’s death following a long battle with the CLN1 form of Batten disease.
As the wind whipped my short hair and my too-thin shirt, I felt an unexpected release from the struggle that had lodged deep in my bones – from losing my only sister to a horrible illness six days after I became a mother. It was the end of a fate that I had already understood for years: no matter how much progress we made, it wouldn’t save Taylor.
I could have cried, but instead I found myself smiling, literally ear to ear. I stood above the valley floor and thought about how gene therapy research funded by Taylor’s Tale will lead to a Taysha Gene Therapies trial for CLN1 disease in a few months. I thought about how the care guidelines that we catalyzed and published in Pediatric neurology this year will help families like mine find a better life, and possibly a longer life for people with Batten disease. I thought about how 21 states now have rare disease advisory councils, following the passage of North Carolina’s law in 2015, known as Taylor’s Law.
I took one last look at the world at 10,800 feet, then started down the mountain with plenty of reasons to keep putting one foot in front of the other. And as the canyon awash in fiery fall colors engulfed me, I remembered who my sister was. I thought about how she lived, not how she died. I reaffirmed my responsibility to make the most of the days I receive.
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