Why I Run to Fight Batten Disease

I’ve written a Batten disease column crammed with running metaphors since 2019, and a nonprofit blog with much of the same for far longer. I’ve run two half-marathons blindfolded and more than 30 half-marathons and races in nearly half of the 50 U.S. states. But why running, and why do I write about it?

My sister, Taylor, was diagnosed with CLN1 disease (Batten disease) on a hot summer day in 2006. Two years later, she had lost most of her vision and endured a six-hour experimental brain surgery. Still, she arrived home from school one day clutching a registration form for Girls on the Run, an organization that inspires girls to build confidence and other important life skills largely via training for a 5K race.

Taylor’s visual impairment turned an ordinary program into a steep challenge. Faced with her situation, many girls her age — she was 9 at the time — would not have joined the team. But more than anything, my sister wanted to be a normal kid. Whether it was reading, writing, dancing, or yes, running, she dared Batten disease to get in her way.

So, my parents signed the registration form, and the school found an older student willing to serve as Taylor’s running buddy. Each afternoon, the running buddy met my sister and her girlfriends at the track for practice. And over the next several months, as North Carolina’s summer heat faded into crisp autumn, Taylor discovered a normal experience she desperately craved at one end of a modified jump-rope — her lifeline.

The girls’ first race happened on a cold December morning. Taylor’s running buddy told our family that Taylor fell several times on the course, but that each time, she stood up and said she wanted to keep running. Just under an hour after I’d stood at the start and watched her fade into the crowd, I saw my blind sister cross the finish line of a 5K, her head held high as if to say, “Take that, Batten disease.”

That was the moment I understood that I’d never give up on my sister, because she didn’t give up on herself. And when the trees bloomed in the spring of 2009, I started running for her.

Running became a connector to my sister, but much like the jump-rope she clutched throughout both of the 5K races she completed, the sport became a lifeline for me. Running lifted me up during my darkest hours as I watched my baby sister slip away to Batten disease. It gave me purpose. And when I spent five months of 2013 becoming a “blind” runner, learning to navigate a 13.1-mile course while wearing a blindfold, running saved my life. It showed me how to believe in spite of a heart-wrenching realization: I’d have to live the rest of my days without Taylor, no matter what Taylor’s Tale achieved for other kids like her.

This fall will mark three years since Taylor broke free of her broken body, but I’m still running about 30 miles per week to train and think and remember the little girl whose life changed the world.

Next month, you can join me in running the Batten Disease Support and Research Association’s Virtual 5K on June 9, Batten Disease Awareness Day. When you register, select Taylor’s Tale as your team and, if you’re comfortable doing so, share a photo of your 5K route on social media with #battenday2021.

Happy running — or walking. For Taylor.

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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.