Just Like Me!: A Book about a Girl with a Rare Disease PDF Download
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Author: Anne Rugari
Publisher: Braughler Books, LLC
ISBN: 9780982218716
Category : Young Adult Nonfiction
Languages : en
Pages : 22
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Book Description
Author: Anne Rugari
Publisher: Braughler Books, LLC
ISBN: 9780982218716
Category : Young Adult Nonfiction
Languages : en
Pages : 22
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Book Description
Author: Taylor Kane
Publisher: Bookbaby
ISBN: 9781543978810
Category : Biography & Autobiography
Languages : en
Pages : 0
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Book 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.
Author: Heather Kamins
Publisher: Penguin
ISBN: 0593109368
Category : Young Adult Fiction
Languages : en
Pages : 273
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Book Description
Flying doesn’t always mean freedom. Anna is a regular teenaged girl. She runs track with her best friend, gets good grades, and sometimes drinks beer at parties. But one day at track practice, Anna falls unconscious . . . but instead of falling down, she falls up, defying gravity in the disturbing first symptom of a mysterious disease. This begins a series of trips to the hospital that soon become Anna’s norm. She’s diagnosed with lepidopsy: a rare illness that causes symptoms reminiscent of moths: floating, attraction to light, a craving for sugar, and for an unlucky few, more dangerous physical manifestations. Anna’s world is turned upside down, and as she learns to cope with her illness, she finds herself drifting further and further away from her former life. Her friends don’t seem to understand, running track is out of the question, and the other kids at the disease clinic she attends once a week are a cruel reminder that things will never be the same. From debut author Heather Kamins comes a beautiful and evocative story about one girl’s journey of choosing who she wants to be--in a life she never planned for.
Author: Tiffany Schmidt
Publisher: Bloomsbury Publishing USA
ISBN: 0802738109
Category : Juvenile Fiction
Languages : en
Pages : 360
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Book Description
In Penelope Landlow's world, almost anything can be bought or sold. She's the daughter of one of the three crime families controlling the black market for organ transplants. Because of an autoimmune disorder that causes her to bruise easily, Penny is considered too "delicate" to handle the family business, or even to step foot outside their estate. All Penelope has ever wanted is independence--until she's suddenly thrust into the dangerous world all alone, forced to stay one step ahead of her family's enemies. As she struggles to survive the power plays of rival crime families, she learns dreams come with casualties, betrayal hurts worse than bruises, and there's nothing she won't risk for the people she loves. Perfect for fans of Holly Black and Kimberly Derting, this first book in the stunning new Once Upon a Crime Family series from acclaimed author Tiffany Schmidt will leave readers breathless.
Author: Nicola Yoon
Publisher: Delacorte Press
ISBN: 0553496662
Category : Young Adult Fiction
Languages : en
Pages : 322
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Book Description
Risk everything for love with this #1 New York Times bestseller from Nicola Yoon • "Gorgeous and lyrical"—The New York Times Book Review What if you couldn’t touch anything in the outside world? Never breathe in the fresh air, feel the sun warm your face . . . or kiss the boy next door? In Everything, Everything, Maddy is a girl who’s literally allergic to the outside world, and Olly is the boy who moves in next door . . . and becomes the greatest risk she’s ever taken. "This extraordinary first novel about love so strong it might kill us is too good to feel like a debut. Tender, creative, beautifully written, and with a great twist, Everything, Everything is one of the best books I've read this year."—Jodi Picoult My disease is as rare as it is famous. Basically, I’m allergic to the world. I don’t leave my house, have not left my house in seventeen years. The only people I ever see are my mom and my nurse, Carla. But then one day, a moving truck arrives next door. I look out my window, and I see him. He's tall, lean and wearing all black—black T-shirt, black jeans, black sneakers, and a black knit cap that covers his hair completely. He catches me looking and stares at me. I stare right back. His name is Olly. Maybe we can’t predict the future, but we can predict some things. For example, I am certainly going to fall in love with Olly. It’s almost certainly going to be a disaster. Everything, Everything will make you laugh, cry, and feel everything in between. It's an innovative, inspiring, and heartbreakingly romantic debut novel that unfolds via vignettes, diary entries, illustrations, and more. And don’t miss Nicola Yoon's bestselling novels The Sun Is Also A Star and Instructions for Dancing.
Author: Heather Lanier
Publisher: Penguin
ISBN: 0525559655
Category : Family & Relationships
Languages : en
Pages : 321
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Book Description
“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.
Author: Ben Watt
Publisher: Open Road + Grove/Atlantic
ISBN: 0802192033
Category : Biography & Autobiography
Languages : en
Pages : 124
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Book Description
A New York Times Notable Book of the Year: “Unforgettable . . . Few have told such a compelling life-story as skillfully” (San Francisco Chronicle). In the summer of 1992, on the eve of an American tour, singer/songwriter Ben Watt, one half of the Billboard-topping pop duo Everything But The Girl, was taken to a London hospital complaining of chest pain. As his condition worsened, doctors were baffled. He was eventually he was diagnosed with a rare life-threatening autoimmune disease called Churg-Strauss Syndrome. “To paraphrase Joseph Heller,” Ben says, “you know it’s something serious when they name it after two guys.” By the time he came home, two-and-half-months later, his ravaged body was forty-six pounds lighter, and he was missing most of his small intestine. “Unfold[ing] like a page-turning mystery” (The Los Angeles Times), and “told with great wit and without self-pity, Patient is a sobering look at how life can suddenly be transformed into a humbling vaudeville of tests, IV’s, catheters, and bedpans” (The New York Times Book Review). Injecting a frankness and natural humility into his “funny, frightening, and piercingly vulnerable” (Interview) chronicle of a medical nightmare, Ben writes about his childhood, reflects on family, and his shared life with band member and partner, Tracey Thorn. The result is “a vivid, finely wrought look at having one’s future yanked away, and surviving physically and emotionally” (Dallas Morning Star-Telegram). A Sunday Times Book of the Year A Village Voice Favorite Book of the Year An Esquire (UK) Best Non-Fiction Award Finalist
Author: Evren And Kara Ayik
Publisher: Kara Ayik
ISBN: 9781736034439
Category : Education
Languages : zh-CN
Pages : 0
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Book Description
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.
Author: Elisa Segrave
Publisher: Union Books
ISBN: 1908526351
Category : History
Languages : en
Pages : 404
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Book Description
'A typical day on the 4 to 12 shift, as I am at present, so that the sheer agony of it may be placed on record for me to look back on, perhaps one day in the far distant future when this period may be seen like a nightmare and be mercifully semi-observed in oblivion so that I shall remember only the glory of my position as the first and only woman on the watch and holding the most responsible position of any woman in the Hut.' October 12th 1942. When Elisa Segrave uncovered a cache of wartime diaries written by her mother, she had no idea that she would be brought face to face with a character utterly different from the troubled woman who had become so reliant on her. Now, on the pages before her, Segrave encountered Anne Hamilton-Grace, a young woman who had grown up in immense privilege and luxury but who leapt at the first opportunity to join the war effort. Through determination she excelled in the world of secret intelligence. Leaving the world of finishing school and hunt balls behind her, Anne’s journey took her to Hut 3 at Bletchley Park, to Bomber Command in Grantham and, finally, to a newly liberated Germany. In The Girl From Station X, Segrave opens the pages of her mother’s diaries to us and recreates her life both before and after the war. At once a vivid recreation of a dramatic era and a powerful portrait of a mother-daughter relationship, this is an original and affecting work about what it means to come to know someone through their writing; about how Anne unwittingly found a way to link her life with her daughter’s decades after they had given up trying to communicate.
Author: Natalie Lloyd
Publisher: Scholastic Inc.
ISBN: 1338654616
Category : Juvenile Fiction
Languages : en
Pages : 283
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Book Description
A Schneider Family Book Award Honor Book From the bestselling author of A Snicker of Magic comes a heartfelt story about a girl who -- armed with her trusty, snazzy wheelchair -- refuses to let her brittle bone disease stand in the way of adventure Twelve-year-old homeschooled Olive is tired of being seen as "fragile" just because she has osteogenesis imperfecta (otherwise known as brittle bone disease) so she's thrilled when she finally convinces her parents to let her attend Macklemore Elementary. Olive can't wait to go to a traditional school and make the friends she's always longed for, until a disastrous first day dashes her hopes of ever fitting in. Then Olive hears whispers about a magical, wish-granting hummingbird that supposedly lives near Macklemore. It’ll be the solution to all her problems! If she can find the bird and prove herself worthy, the creature will make her most desperate, secret wish come true. When it becomes clear that she can't solve the mystery on her own, Olive teams up with some unlikely allies who help her learn the truth about the bird. And on the way, she just might learn that our fragile places lead us to the most wonderful magic of all...
