In ‘Blind Momentum,’ Batten disease takes a back seat to bravery

A movie will cover a world-record attempt at the Kiawah Island Half Marathon

by Laura King Edwards | September 20, 2023

I have big news to share this month: I’m making a movie!

If you regularly read my column, you’ll already know that in December, I’ll attempt to break a world record for the fastest blindfolded half-marathon. This effort, intended to honor the legacy of my late sister, Taylor, will be captured in a documentary film.

About the film

“Blind Momentum” will showcase the power of the human spirit and the extraordinary achievements that are possible when we dare to dream big and refuse to give up. And much like Taylor’s amazing story, I believe this film will inspire people to face their own challenges and pursue their passions with unwavering determination.

The film is now in production and will conclude with my world-record attempt at the Kiawah Island Half Marathon in South Carolina. It’s expected to premiere next spring.

The main graphic for the upcoming documentary film "Blind Momentum," which shows the title in white letters set on a colored background that starts with light purple on the left and fades to pink, then red, as one looks from left to right.

(Image by Tice Studios)

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The real heroine of the story

Batten disease is a rotten condition. But my sister’s courage in the face of a disease that stole her ability to see, walk, talk, and swallow food often left me spellbound in moments that, years later, I can still see, hear, smell, taste, and feel.

That’s the stuff of a girl who never backed down from a challenge. It’s the effect of a girl who, already blind and seven months removed from an experimental stem cell transplant, arrived home from school with a sign-up sheet for a program called Girls on the Run. This program inspires young girls to build confidence and develops other critical life skills through interactive lessons and physical activity. Teams train to run a 5K race at the end of the semester.

When Taylor handed our mother the sign-up sheet on that long-ago afternoon, Mom struggled to find the right words to say “You can’t run because you’re blind” without breaking her youngest child’s heart. But Taylor insisted she could do it, compelling my parents — and the team’s coaches — to find a way. When a high school student agreed to serve as my sister’s running buddy, it was settled.

Again, if you’re familiar with our story or have read my memoir, “Run to the Light,” you know that Taylor was successful in her quest to run not one, but two 5K races that year. She didn’t run fast enough to win an award, but she earned something far more valuable. By focusing not on what she’d lost but on what she could still do, she showed herself that she could do hard things. Break barriers. Shock the world. Banish Batten disease to the background, if only for the time that it took her to run those 5Ks.

I may be the star of this film, but Taylor is the real heroine.

Why I’m doing this

Taylor never cared about speed, so why try to break a world record based on speed in her memory?

Because it will be hard. And while I can’t promise that I’ll succeed, I can promise that I’ll give it my best shot, just as Taylor did at every turn. I’m honored that the team behind “Blind Momentum” will capture it all — the good, the bad, and the ugly — on film.

This one’s for you, Taylor. And if I should ever grow discouraged along the way, I’ll only have to remember that you’re watching every step, fueling my passion, and, I hope, cheering me on.

Learn more about “Blind Momentum” and watch the first trailer on the film’s website. For timely updates and behind-the-scenes peeks, follow “Blind Momentum” on Instagram @blindmomentum.

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.

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About the Author

Laura King Edwards Laura King Edwards cofounded Taylor’s Tale, one of the leading forces in the fight against Batten disease. Her sister, Taylor, was diagnosed with CLN1 disease at age 7. Laura writes “The Long Sprint” to inform and inspire anyone affected by rare disease. She is a professional content writer and published author. Her memoir, “Run to the Light,” hit shelves in 2018. She is also a TEDx speaker and prolific runner. Laura earned an English degree from the University of North Carolina at Chapel Hill. A native of Charlotte, she lives with her husband and son in Fort Mill, South Carolina.

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