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I’ve been writing a column on Batten disease crammed with common metaphors since 2019, and a nonprofit blog with much of the same for much longer. I have run two blindfolded half marathons and over 30 half marathons and races in almost half of the 50 US states. But why run, and why am I writing 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 underwent experimental six-month brain surgery. time. Still, she came home from school one day with a sign-up form for Girls on the Run, an organization that inspires girls to build confidence and other important life skills, mostly in life skills. training for a 5 km run.

Taylor’s visual impairment turned an ordinary program into a daunting 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 child. Whether reading, writing, dancing or, yes, running, she dared Batten’s disease to get in her way.

So my parents signed the registration form and the school found an older student ready to become Taylor’s running buddy. Every afternoon the running buddy would meet my sister and her girlfriends on the track to practice. And over the next several months, as the North Carolina summer heat faded into a cool fall, Taylor discovered a normal experience she desperately needed at one end of a modified skipping rope – his lifeline.

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

It was then that I understood that I would never abandon my sister, because she did not abandon herself to herself. And when the trees bloomed in the spring of 2009, I started running for her.

Running became a bond with my sister, but just like the jump rope she held throughout the two 5k races she completed, the sport became a lifeline for me. Running lifted me up during my darkest hours as I watched my little sister walk away from Batten disease. It gave me a purpose. And when I spent five months in 2013 becoming a “blind” runner, learning to run a 13.1 mile course while wearing a blindfold, running saved my life. It showed me how to believe despite a heartbreaking realization: I would have to live the rest of my life without Taylor, no matter what Taylor’s Tale has achieved for other kids like her.

This fall will mark three years since Taylor freed herself from her broken body, but I still run about 30 miles a week to train, think, and remember the little girl whose life changed the world.

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

Have a good run – or walk. For Taylor.


To note: Batten Disease News is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not 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 aim to spark discussion about issues related to Batten disease.


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