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The world expected little of my younger sister, Taylor. And why wouldn’t they? After all, his diagnosis of CLN1 disease (Batten’s disease) at the age of 7 defied his dreams for the future. Science said that instead of living life to its fullest, it would simply lose it.

But Taylor had other plans. Consider some of the following ways she dared Batten’s disease to stop it — and came out on top:

1. Learn arithmetic: Taylor learned to read when she was 3 years old. She read entire picture books aloud from the back seat of the car for the time it took to grab a pizza just down the road. But math was never her strong suit, sometimes bringing her to tears as she struggled to complete her first-grade homework. Yet, instead of quitting, Taylor gritted her teeth and kept trying. I have fond memories of the rainy Saturday afternoons we shared at the neighborhood Starbucks — painful as they were — when she pondered arithmetic over decaf lattes and black-and-white cookies.

2. Reading at your fingertips: A less ambitious child may have taken Batten disease as a free pass to relax at school – to throw in the towel on learning. Instead, Taylor learned braille, opening a window when blindness slammed the door on traditional reading and writing. Almost four years after her death, I still have all the Braille letters and cards my sister made for me.

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3. Performing on stage: In the winter of 2008, Taylor participated in a clinical trial in Portland, Oregon, thousands of miles from our home on the East Coast. When she arrived home and returned to school, her long hair replaced by the stubble that barely hid the surgical scars on her scalp, she found that her friends had carved a place for her in their routine of talent show. That’s how my blind sister found herself on stage performing dance moves she had never seen before with minimal time to practice.

4. Have a social life: I was an awkward preteen, and middle school dances terrified me. Not Taylor. My sister never questioned the normality of a blind, shuffling girl attending a ball. She just went – and still on a date. If laughter can light up a dark room, my sister surely can.

5. Run a race: Taylor ran not one, but two 5k races with Girls on the Run as a fifth grader. Have you ever wondered why this column is called “The Long Sprint” or why I refer to running so often? Because Taylor did it first.

6. Love: Batten’s disease is unfair in the cruellest sense of the word. If hatred had raced through my sister’s veins, I wouldn’t have blamed her. But Taylor reminded me of what love was like in my darkest days, when I was angry at the world.

7. Live: Taylor’s last years on Earth were anything but easy. She couldn’t see, walk, talk or swallow food. She suffered from seizures. She suffered, period. But Taylor left this world on her own terms and on her own schedule, knocking death out of her door repeatedly during her difficult final weeks. She waited for a comfortable, sunny hospice room and the birth of my son and, finally, an illicit hospital visit from her dog, posing as a pet therapy professional, hours before Taylor returned her last breath.

taylors latte |  Batten Disease News |  Taylor lies in a hospital bed just hours before taking her last breath in 2018. By her side are her mother, Sharon, and their dog.

Taylor and her mother, Sharon, with their dog, hours before Taylor breathed her last in 2018. (Courtesy Laura King Edwards)

Life is funny. Love is limitless. And as Taylor taught me, the impossible is possible, as long as you believe in it.

Taylor inspired Taylor’s Tale, a non-profit organization that exists to make the impossible possible. My sister may be gone, but her legacy lives on.


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 replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 Batten disease issues.