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Book details
  • Genre:BIOGRAPHY & AUTOBIOGRAPHY
  • SubGenre:Medical
  • Language:English
  • Pages:208
  • Format:Paperback
  • eBook ISBN:9781543978827
  • Paperback ISBN:9781543978810

Rare Like Us

From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease

by Taylor Kane View author's profile page

Overview

Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her...

This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.

Description

Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.

Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future.

In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud.

This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.

About the author
Taylor Kane is the founder and president of the non-profit, Remember the Girls, an international support and advocacy organization which unites, educates and empowers female carriers of rare genetic disorders--a group which is underrepresented and often overlooked by the medical profession. Taylor learned that she, herself, was a carrier of the rare genetic disease Adrenoleukodystrophy (ALD) after her father died from the disease when she was five years old and has been a fierce advocate ever since, working to raise awareness of the disease as well as funds for ALD research. In 2013, she successfully lobbied the New Jersey legislature and governor to enact a law requiring the screening of newborns for ALD, as the disease can only be cured if treated before symptoms develop. Taylor is an accomplished speaker, author, and an award-winning activist. She is currently a senior at The George Washington University in Washington, D.C. where she is pursuing a bachelor's degree in Political Communication with a minor in Women's Studies. Taylor calls Mount Laurel, New Jersey home. In her free time she enjoys reading, watching documentaries, and relaxing with her dog, Jynx.


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