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Equal parts beautiful and bold, my sister, Taylor, knew how to get what she wanted, whether through serious effort or effortless charm. The youngest member of his family at 11 and often the youngest student in his class, Taylor nonetheless wrapped everyone around his little finger and didn’t let go. As a toddler, she regularly got the best of our brother. At age 3, she learned to read. At the age of 5, she pirouettes on a stage and seizes the star.

Then at the start of the second year, the lights went out. Taylor’s suddenly failing vision marked the beginning of a long and torturous slide called Batten disease.

Since having major ankle surgery in January, I’ve devoured books, memoirs and novels, comedies and mystery novels. This week I’m reading “All the Light We Can’t See” by Anthony Doerr, winner of the 2015 Pulitzer Prize for Fiction and part story of a blind French woman in occupied France during World War II. I don’t know why I waited so long to read his wonderful prose. Two-thirds into the story, Doerr constructs a scene in which Marie-Laure, the blind girl, and her uncle listen to Vivaldi on a forbidden radio in a secret attic:

“In the center of the freckles, these two eyes hang motionless, like the shells of spider eggs. They don’t stalk him, but they don’t piss him off either; they almost seem to see in a separate, deeper place, a world that consists only of music.

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In the real world, about 70 years later, my sister inhaled music the same way. Sound, like touch, taste and smell, was a lifeline for the rest of humanity. Taylor spent more than half of her short life in the dark, but when her vision failed, her other senses worked tirelessly. She had an amazing ability to not only navigate spaces (often purely through memory), but also to connect with the life that takes place there. She searched through stacks of CDs, all labeled with raised braille dots, and later learned how to operate a crystal pink iPod. She listened to entire films and, until she lost her ability to speak, sang entire songs.

This attic scene from Doerr’s novel reminded me of a night on Folly Beach in South Carolina in 2012, six years after Taylor’s disease diagnosis and six years before his death. My sister’s mobility had diminished enough that she needed help walking to chairs set up in soft sand for a wedding ceremony. However, at the reception later, Taylor found herself in the middle of the dance floor. As I wrote on my blog a few days later, there his light shone brightly.

Mobility is a gift, something I often thought about while recovering from my surgery. I’m grateful for the wonders of modern science and orthopedic medicine, and if I’m lucky, I could be running my next race as early as eight months after surgery. But Batten’s disease has no such answers, and my sister spent the last years of her life in a wheelchair.

Maybe that’s why I’ll never forget moments like that night on the ocean. I can still smell the salty breeze and the white wine. I can still hear the rhythm of the music and the cacophony of happy voices. But above all, I can still see my sister, her wide smile, her laughing eyes, her light illuminating the world.

light |  Batten Disease News |  photo of Taylor and her mother, Sharon, wearing orange dresses and dancing together

From left, Taylor and her mother, Sharon, dance at a wedding reception in 2012. (Courtesy Laura King Edwards)


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.