So long to ‘The Long Sprint,’ but not my fight against Batten disease

Since 2019, I’ve penned “The Long Sprint,” my Batten Disease News column dedicated to informing and inspiring people affected by rare disease. Now, nearly five years later, it’s time for me to say farewell.

My sister, Taylor, was diagnosed with CLN1 disease (a form of Batten disease) in 2006. The tragic news could’ve taken our family down in an instant. Instead, my sister’s courage triggered a marathon battle and launched a scrappy charity called Taylor’s Tale. Produced promising research and a trailblazing gene therapy treatment. Inspired the nation’s first rare disease advisory council in North Carolina (the legislation that established it is now known as Taylor’s Law) — a step that has since been followed by 26 other states. Moved me to write a memoir, “Run to the Light.” Emboldened me to run more than 100 races, including nearly 50 half-marathons — three of them blindfolded.

It’s a journey that’s spanned nearly two decades, by turns agonizingly slow and lightning fast. It’s a climb that’s gained ground by leaps and bounds yet too little, too late to save Taylor. She died on a beautiful September day in 2018, not long after friends snuck her dog into the inpatient hospice unit to say goodbye. My sister was 20 years old.

I, on the other hand, have done plenty of living since a rare disease diagnosis doomed my baby sister. A newlywed when we received the news, I’ve since forged a successful marketing career, built a house, overcome my fear of public speaking, published a book, become a mom, and done courageous (some would say crazy) things in running shoes. My normal copy of the CLN1 gene gave me a license to live — and I’m far from done. But it’s time to pass the Batten Disease News baton and this corner of the internet to somebody else.

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Honoring my sister, who taught me how to persevere

Last month, I attempted to set a world record for fastest blindfolded half-marathon by a woman. Though I’d run the Charlotte Half Marathon blindfolded just six weeks after giving birth in 2018, this race was far more difficult and dangerous because the record guidelines prevented the use of a tether.

It was one of the hardest things I’ve ever done. Physically, I was ready for the challenge. But the unseasonably warm day, high humidity, and difficult sections of the course were too much to overcome. I finished in one hour, 57 minutes and change, missing the world record by a mere two minutes and nine seconds. Nearly a month later, I still feel the pain of a close call. I think I always will.

I don’t know what’s next for my running career, much less the rest of my life. But to take tomorrow for granted would be akin to dishonoring my late sister, who made the most of the too-short time she had on Earth.

That’s why, while I’m saying “so long” to “The Long Sprint,” I’m not saying so long to this journey or the fight against Batten disease.

Not by a long shot.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.