Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease

Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease

by Taylor Kane

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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. 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 strives 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.

Product Details

ISBN-13: 9781543978810
Publisher: BookBaby
Publication date: 09/02/2019
Pages: 208
Sales rank: 541,740
Product dimensions: 6.00(w) x 9.00(h) x 0.50(d)

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.

Table of Contents

Preface ix

Part 1 1

1 Always in Our Hearts 3

2 The Nightmare Begins 9

3 Our New Normal 15

4 The Magic Kingdom 21

5 Running Away 27

6 Firemen and Fundraisers 35

7 Making Mountains Out of Molehills 39

8 When It Rains, It Pours 45

9 The Power of Denial 51

10 The Run for ALD 59

11 Judgers and Judges 65

12 In the Eye of the Storm 73

13 Life in a Bubble 79

14 My Fifth Summer 85

15 The Beginning of the End 89

16 My Dad Gets His Wings 95

Part 2 111

17 Coping and Moving On 113

18 Children Grieve Too 117

19 Finding My Voice 125

20 Taking the Bad with the Good 131

21 Distressed Genes 137

22 Telling My Story 143

23 The Power of Volunteering 153

24 Anyone Can Be a Hero 159

25 Reaching Out 167

26 Staking Out My Future 173

27 Remember the Girls 179

Epilogue 185

Resources 191

About the Author 195

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