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

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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 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.


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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 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.

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

  1. 4 out of 5

    Rebekah Palmer

    "....But some people just can't face illness. They don't know what to say to someone who's sick, or maybe it reminds them that they could get sick too." -Diane Kane (Taylor's mom) This book is written from the perspective of a Generation Z young adult (born after the year 2000) daughter of a father who lived and died with an X linked recessive rare disease called Adrenoleukodystropy (ALD). She grew up in New Jersey and travelling to Philadelphia as well as college in Washington, D.C. It was impor "....But some people just can't face illness. They don't know what to say to someone who's sick, or maybe it reminds them that they could get sick too." -Diane Kane (Taylor's mom) This book is written from the perspective of a Generation Z young adult (born after the year 2000) daughter of a father who lived and died with an X linked recessive rare disease called Adrenoleukodystropy (ALD). She grew up in New Jersey and travelling to Philadelphia as well as college in Washington, D.C. It was important to me that Taylor included many scenes showing what childhood and teenage grief is and can look like. I appreciated that she was honest in portraying those we consider heros have diagnoses of generalized anxiety disorder and major depressive disorder. Her vulnerability in relaying what carriers of rare diseases consider, and what childhood events can shape our life on earth is relevant for those engaging with families wherein a member is chronically/terminally sick. Many times our internalized ableism tells us to fight this and get over it and return to a normal that society has no business to deem as superior to any one's ability to live inside it systemically. Taylor grew up in a digital age of awareness and east coast proximity to medical centers that study rare diseases so uses that privilege to engage with peers and start non profits in rare community with a focus on female healthcare.

  2. 5 out of 5

    Fernanda Fadel

    My review and some more about rare genetic diseases can be found here: https://medium.com/@ferrufa/rare-gene... My review and some more about rare genetic diseases can be found here: https://medium.com/@ferrufa/rare-gene...

  3. 4 out of 5

    Aishwarya

    Taylor does a wonderful job sharing her family's journey with x-linked adrenoleukodystrophy and how this has impacted her life's mission. Taylor does a wonderful job sharing her family's journey with x-linked adrenoleukodystrophy and how this has impacted her life's mission.

  4. 5 out of 5

    Jessa Hay

  5. 5 out of 5

    Linda Fardella

  6. 4 out of 5

    Aimee Boisvert

  7. 4 out of 5

    Dikane2

  8. 4 out of 5

    Kevin Schnurr

  9. 5 out of 5

    Taylor Kane

  10. 5 out of 5

    Liz

  11. 5 out of 5

    Julia Ma

  12. 5 out of 5

    Shambhavi Ravishankar

  13. 5 out of 5

    Ryan

  14. 4 out of 5

    Catherine Coakley

  15. 5 out of 5

    Carissa

  16. 5 out of 5

    Andrea

  17. 4 out of 5

    Sheridan

  18. 4 out of 5

    Devin Shuman

  19. 4 out of 5

    Cathryn

  20. 5 out of 5

    Ellie Mumma

  21. 4 out of 5

    Katie

  22. 5 out of 5

    Rebecca

  23. 4 out of 5

    Natalie Holmes

  24. 5 out of 5

    Carmadie Belen

  25. 5 out of 5

    Taylor Kane

  26. 4 out of 5

    Dikane2

  27. 5 out of 5

    Ameenah

  28. 5 out of 5

    Dean Suhr

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