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.

How I Reclaim Anniversary Days From Batten Disease

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease. I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally…

6.2 Miles to Courage on Casco Bay

I didn’t have high expectations when I slipped into the crowd at the starting line of this month’s Beach to Beacon 10K race in Cape Elizabeth, Maine. After all, I hadn’t gone for a run in seven months following major ankle surgery. Instead, I spent most…

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,…