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Rare Like Us

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Author :
Release : 2019-09-02
Genre : Biography & Autobiography
Kind : eBook
Book Rating : 810/5 ( reviews)

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Book Synopsis Rare Like Us by : Taylor Kane

Download or read book Rare Like Us written by Taylor Kane. This book was released on 2019-09-02. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Just Like Me!: A Book about a Girl with a Rare Disease

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Author :
Release : 2018-10-30
Genre : Young Adult Nonfiction
Kind : eBook
Book Rating : 716/5 ( reviews)

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Book Synopsis Just Like Me!: A Book about a Girl with a Rare Disease by : Anne Rugari

Download or read book Just Like Me!: A Book about a Girl with a Rare Disease written by Anne Rugari. This book was released on 2018-10-30. Available in PDF, EPUB and Kindle. Book excerpt:

Extraordinary! A Book for Children with Rare Diseases (Mandarin)

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Author :
Release : 2022-03-03
Genre : Education
Kind : eBook
Book Rating : 439/5 ( reviews)

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Book Synopsis Extraordinary! A Book for Children with Rare Diseases (Mandarin) by : Evren And Kara Ayik

Download or read book Extraordinary! A Book for Children with Rare Diseases (Mandarin) written by Evren And Kara Ayik. This book was released on 2022-03-03. Available in PDF, EPUB and Kindle. Book excerpt: 是什么让罕见病儿童非同寻常? 聆听罕见病儿童埃夫伦自我成长的心路历程,探索问题答案! 本书由母子联手创作,基于罕见病患者面临的挑战与机遇,就身份、包容与自我认知展开适合孩子的讨论。书中的经验全部是小作者作为超罕见病患者一路长大的亲身经历,旨在为小读者理解个人身份和罕见病对个人身份的正面影响提供指南。家庭成员和护理人员也可以积极参与孩子的探索过程,根据孩子的成长需求制定读书计划。 本书插图由获奖童书插画家伊恩-戴尔绘制。《非同寻常的你!》旨在通过其由衷的文字和敏感又真实的插画鼓舞、激励所有患有罕见病的孩子活出最美好的一生。 What makes a child with a rare disease extraordinary? Explore the answer to this question while sharing a conversation with Evren about what he has learned while growing up with his own rare disease. Written collaboratively by mother and son, this book opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. The gentle lessons draw on the co-author's first-hand experience of growing up with an ultra-rare disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader's developmental needs. Accompanied by sensitive yet realistic illustrations created by award-winning artist and children's book illustrator Ian Dale, the heartfelt messages introduced in Extraordinary! are intended to uplift and encourage any children living with rare diseases to live their very best lives.

Orphan

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Author :
Release : 2015
Genre : Medical
Kind : eBook
Book Rating : 373/5 ( reviews)

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Book Synopsis Orphan by : Philip Reilly

Download or read book Orphan written by Philip Reilly. This book was released on 2015. Available in PDF, EPUB and Kindle. Book excerpt: "This book is about the struggle to save the lives of children who, because of a roll of the genetic dice, are born with any one of more than several thousand rare genetic disorders. It recounts the now century long effort of small groups of physicians and scientists to take on some of these genetic diseases. In many cases just a few physician-scie

Raising a Rare Girl

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Author :
Release : 2021-07-06
Genre : Family & Relationships
Kind : eBook
Book Rating : 655/5 ( reviews)

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Book Synopsis Raising a Rare Girl by : Heather Lanier

Download or read book Raising a Rare Girl written by Heather Lanier. This book was released on 2021-07-06. Available in PDF, EPUB and Kindle. Book excerpt: “A remarkable book . . . I found myself thinking that all expectant and new parents should read it.” —Michelle Slater A New York Times Book Review Editors' Choice In Raising a Rare Girl, Lanier explores how to defy the tyranny of normal and embrace parenthood as a spiritual practice that breaks us open in the best of ways. Like many women of her generation, when Heather Lanier was expecting her first child she did everything by the book in the hope that she could create a SuperBaby, a supremely healthy human destined for a high-achieving future. But her daughter Fiona challenged all of Lanier’s preconceptions. Born with an ultra-rare syndrome known as Wolf-Hirschhorn, Fiona received a daunting prognosis: she would experience significant developmental delays and might not reach her second birthday. The diagnosis obliterated Lanier’s perfectionist tendencies, along with her most closely held beliefs about certainty, vulnerability, God, and love. With tiny bits of mozzarella cheese, a walker rolled to library story time, a talking iPad app, and a whole lot of pop and reggae, mother and daughter spend their days doing whatever it takes to give Fiona nourishment, movement, and language. Loving Fiona opens Lanier up to new understandings of what it means to be human, what it takes to be a mother, and above all, the aching joy and wonder that come from embracing the unique life of her rare girl.

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