The Long Sprint - a Column by Laura King Edwards

fight

Laura 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.

7 Ways My Sister, Taylor, Defied Batten Disease

The world expected little from my younger sister, Taylor. And why shouldn’t they? After all, her diagnosis of CLN1 disease (Batten disease) at the age of 7 defied dreams for her future. Science said that instead of living life to the fullest, she’d simply lose it. But Taylor…

Her Light Brightened the World

Equal parts beautiful and bold, my sister, Taylor, knew how to get what she wanted, whether through earnest effort or effortless charm. The youngest member of her family by 11 years and often the youngest student in her class, Taylor nevertheless wrapped everyone around her little finger and didn’t…

Focusing on Better Quality of Life in Batten Disease

Like life, Batten disease is a game of inches. Get approved for physical therapy? You may walk long after your eyes stop working. Get denied those services? You may stop walking long before modern medicine says you should. Consume the perfect cocktail of anti-seizure medications? You may just have a…

My Will Is Strong to Keep Fighting Like a Sister

I haven’t walked in 36 days, three hours, and 16 minutes. Not that I’m keeping count or anything. Since having major ankle surgery on Jan. 14, I’ve undergone a crash course in life without the gift of mobility. Though I’ve been injury-riddled since I was a 17-year-old soccer midfielder,…

The Gift of Mobility

For most of us, January means a new beginning. For me, January 2022 also means a new left ankle — a souvenir from over 40 half-marathons and a 25-year soccer career. And while I’m already dreaming about my next race, the looming surgery also has me thinking long and…

We Could All Stand to Be More Like Kids

This will be my fourth Christmas without my sister. Taylor lost her life to CLN1 disease (Batten disease) in 2018, yet Mom still hangs her stocking from the mantle every Thanksgiving weekend. My son, Jack, keeps the spirit of Taylor’s beloved singing angels alive, carrying the haloed host everywhere…

I’m Redefining What Giving My Best Means

I’ve run nearly 40 half marathons — two of them blindfolded — but zero marathons. This fact surprises a lot of people, but I know my own story all too well. I know that the only time I trained for a full marathon, my joints couldn’t take the high training…

Reaching for Life Atop the Great Divide

On a cool morning in Wyoming’s Teton Range late last month, I laced up a pair of dusty, well-worn boots and ventured into a glacier-carved gorge called Death Canyon. Having left my 3-year-old son with my parents at our cabin in Jackson, I’d set my heart on attempting the toughest,…