Run to the Light

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runtothelight-lg Laura King Edwards
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Bink Books
pp. ●
$ (pb) ● $ (eb)
ISBN (pb)

Memoir
Batten disease

Publication date: November 2018

About the Book

After graduating from college, Laura had a great job in marketing, a loving fiancé, and she enjoyed living in her hometown of Charlotte, so she could watch her younger sister Taylor, only seven years old, grow up. Laura hadn’t been happy back in high school when her mother had had another baby; she thought she and her brother should have been enough. But she adored Taylor and doted on her, spending many weekends visiting her and taking her on trips and outings. The whole family went to the state fair and when Taylor tripped at a food vendor, they realized Taylor had a hard time seeing the stairs. They had some testing done and the family learned the shocking news: Taylor has Batten disease. A rare, fatal, genetic disease that would cause Taylor to go blind, suffer seizures, and lose the ability to walk and talk. There is no cure. Laura thought she’d get to watch her baby sister grow up, but instead she’d get to watch her die.

Laura threw herself into researching, support, and advocacy, founding a charity with her mother and friends, Taylor’s Tale, that has so far raised nearly $1 million for medical research and inspired a law establishing the nation’s first rare disease advisory council in North Carolina. Meanwhile, Taylor started running with Girls on the Run in grade school, completing her first 5K race after she’d gone completely blind. Inspired, Laura, a lifelong runner, began running in half marathons to raise money and awareness. And also to run away from the pain.

Taylor’s Tale became a world leader in the fight against rare diseases, yet it couldn’t develop treatments quickly enough to save Taylor. When Batten disease devastated Taylor’s body, the pressure to save her sister became too much for Laura. Stripped of her faith, Laura fell into a dark despair. But Taylor’s unwavering courage in the face of certain death gave Laura a renewed sense of purpose, and she grew determined to fulfill her sister’s legacy. In a symbolic act that gained national attention, Laura returned to the event where Taylor had run her first 5K and competed in the half marathon—blindfolded.

Laura knows the tragic way her sister’s story will end. But she also knows the gift that Taylor is and what it means to believe. Now Laura hopes to spare others the same torture, of watching a loved one slip away, piece by piece. Taylor can’t tell her own story, so Laura is.


In the Media

Laura King Edwards: FACES of Charlotte” by Michelle Boudin, StyleBlueprint


Praise

“Run to the Light shows us that running is the ultimate faith healer, restoring belief not only in oneself but life’s possibilities. Taylor can’t run but her spirit is with Laura every stride, every breath and every finish line.” — Bart Yasso, member, Running USA Hall of Champions; former chief running officer, Runner’s World

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There is death in the air, but Laura King Edwards defies it every step of the way, running to beat the odds on behalf of her sister and every child suffering at the hand of an incurable disease. Beautifully and thoughtfully written, this personal account of triumph in the face of tragedy will steal your heart.” ~Linda Vigen Phillips, author of Crazy (Junior Library Guild selection and New York Public Library Best Books for Teens 2014)

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Laura King Edwards’s younger sister, Taylor, was diagnosed with Batten disease, a rare, degenerative brain disease with no known treatment or cure, just a few weeks before Taylor’s eighth birthday and a month after Laura’s wedding. You might be concerned that this memoir will be depressing. But you’d be wrong. Because of the author’s dazzling use of language, because of her brave wisdom, because of her intense love for her sister, this book is powerfully uplifting. Prepare for an emotional impact: you’ll discover, along with the author, how to find hope and meaning in the midst of life’s ruthless complexities.” ~Judy Goldman, author of five books including the memoir Losing My Sister

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In this powerful memoir, Run to the Light, a talented new writer, Laura King Edwards, tells a vivid, realistic, and heart-wrenching tale of supreme courage, perseverance, and faith in the face of unthinkable darkness. You will be weeping tears of sadness at the beginning and tears of inspiration at the end of this remarkable, sweet tale of a sister’s love and devotion. It is a tale full of beauty, power, and grace. Every page led to an inspiring ending, and I loved reading it!” ~Susan C. Ketchin, author of The Christ-Haunted Landscape: Faith and Doubt in Southern Fiction

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Laura King Edwards’s Run to the Light is an intensely moving, lyrical tribute to her sister Taylor, who has a form of a devastating inherited neurological condition called Batten disease. Laura was initially less-than-thrilled to become a big sister during her sophomore year of high school, and was at first resentful of her involvement in Taylor’s care. Laura could hardly have known that those were the good days, when Taylor was bright, beautiful, and active. The disease made its presence known slowly, and Laura relates the intensifying feelings as the diagnostic odyssey led from visual loss to a much more all-encompassing disorder. The family even trekked from their homes in North Carolina for Taylor to undergo experimental stem cell treatment in Oregon. Taylor is still beautiful, but Batten disease has taken its toll. Today she can’t eat, walk, or see. Yet she smells, smiles, hears, and loves. Taylor is still very much Taylor. In Run to the Light, Laura chronicles the family’s battle against Batten, culminating in her efforts to run a half marathon blindfolded in Taylor’s honor. It is a compelling and unforgettable story of the love of two sisters.” ~Ricki Lewis, geneticist and author of The Forever Fix: Gene Therapy and the Boy Who Saved It

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Laura takes us on a journey that is so compelling, so honest, so raw, so heartfelt, it’s nearly impossible to put it down. Crafted with love and wrapped in vulnerability and strength, it’s the kind of story that makes you want to stand up and take immediate action. I’m inspired and awed, and I know that Laura and her family are creating the kind of change that will impact thousands and thousands of ‘Taylors’ to come.” ~Jen Band, TEDx speaker and Playing for Others founder and executive director

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In Run to the Light, Laura King Edwards proves that one person really can make a difference in the world. Some tasks, from running a half marathon blindfolded to finding a cure for Batten disease, can feel impossible at first. But through hard work and never giving up, Laura shows that there is much to be hopeful about and anything is possible.” ~Jesica D’Avanza, runner, marathon coach, and author of runladylike.com


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