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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Author: Anne Rugari
Publisher: Braughler Books, LLC
ISBN: 9780982218716
Category : Young Adult Nonfiction
Languages : en
Pages : 22
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Book Description
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: 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 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: Holly Whitaker
Publisher: Dial Press
ISBN: 1984825062
Category : Self-Help
Languages : en
Pages : 384
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Book Description
NEW YORK TIMES BESTSELLER • “An unflinching examination of how our drinking culture hurts women and a gorgeous memoir of how one woman healed herself.”—Glennon Doyle, #1 New York Times bestselling author of Untamed “You don’t know how much you need this book, or maybe you do. Either way, it will save your life.”—Melissa Hartwig Urban, Whole30 co-founder and CEO The founder of the first female-focused recovery program offers a groundbreaking look at alcohol and a radical new path to sobriety. We live in a world obsessed with drinking. We drink at baby showers and work events, brunch and book club, graduations and funerals. Yet no one ever questions alcohol’s ubiquity—in fact, the only thing ever questioned is why someone doesn’t drink. It is a qualifier for belonging and if you don’t imbibe, you are considered an anomaly. As a society, we are obsessed with health and wellness, yet we uphold alcohol as some kind of magic elixir, though it is anything but. When Holly Whitaker decided to seek help after one too many benders, she embarked on a journey that led not only to her own sobriety, but revealed the insidious role alcohol plays in our society and in the lives of women in particular. What’s more, she could not ignore the ways that alcohol companies were targeting women, just as the tobacco industry had successfully done generations before. Fueled by her own emerging feminism, she also realized that the predominant systems of recovery are archaic, patriarchal, and ineffective for the unique needs of women and other historically oppressed people—who don’t need to lose their egos and surrender to a male concept of God, as the tenets of Alcoholics Anonymous state, but who need to cultivate a deeper understanding of their own identities and take control of their lives. When Holly found an alternate way out of her own addiction, she felt a calling to create a sober community with resources for anyone questioning their relationship with drinking, so that they might find their way as well. Her resultant feminine-centric recovery program focuses on getting at the root causes that lead people to overindulge and provides the tools necessary to break the cycle of addiction, showing us what is possible when we remove alcohol and destroy our belief system around it. Written in a relatable voice that is honest and witty, Quit Like a Woman is at once a groundbreaking look at drinking culture and a road map to cutting out alcohol in order to live our best lives without the crutch of intoxication. You will never look at drinking the same way again.
Author: Danielle Ripley-Burgess
Publisher:
ISBN: 9781646451265
Category :
Languages : en
Pages : 352
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Book Description
NOBODY SAID growing up is easy. For Danielle, the safe suburbs of Kansas City always felt warm. Inviting. But one day, everything changed. Not only did she hate what puberty was doing to her body, she had spotted a few scary specks of blood after going number two. Gross. As an insecure tween who blushed during the talk, one who refused to buy toilet paper at the store, nobody could know her little secret. So she hid it from everyone-Mom, Dad, her brother, and her friends. This went on ... for years. Busted. Eventually, her secret came out. Danielle was rushed to the doctor and into a colonoscopy. Shock took over when she was diagnosed with a rare colon cancer (something the internet called an old man's disease) just a few weeks after her seventeenth birthday. Seriously!? High school mornings in classrooms morphed into nightmare days in cancer-center waiting rooms. Yet Danielle stayed hopeful, even grateful, for her illness. The way she saw it, fighting cancer spiced up her otherwise-boring testimony. And it brought her true love. Not until she heard the dreaded It's cancer again at age twenty-five did she start to resent so much suffering and question her faith. Yet Danielle wasn't about to stop. From Times Square to the White House, she became an outspoken survivor by starting a blog, as well as a young wife and a mom. Eventually, she found the self-acceptance she'd been looking for-it was guided by a still, small voice that had been with her all along. In this soul-baring memoir, Blush: How I Barely Survived 17, Danielle reminds us that growing up is never easy, and she shows us how to go head to head with God. With out-of-body wisdom beyond its years, Blush beautifully inspires us to accept our imperfections and embrace every season of life. AUTHOR BIOGRAPHY: Danielle Ripley-Burgess is a two-time colon cancer survivor first diagnosed at age seventeen and an award-winning communications professional. She writes and speaks to encourage those facing trials, under a motto of faith that survives. She's the author of Blush: How I Barely Survived 17 (Redemption Press, 2020), The Holiday Girls (Little Lights Studio, 2018), and Unexpected: 25 Advent Devotionals. Her story has been told around the world through outlets like The Today Show, BBC's World Have Your Say, Sirius Radio's Doctor Radio, the Chicago Tribune, the Huffington Post, among others. Home is in Kansas City with her husband, Mike, and daughter, Mae. When she's not writing, she can be found baking her favorite chocolate chip cookie recipe. It's a good one. Follow her blog at DanielleRipleyBurgess.com or connect on social media at @DanielleisB.
Author: Regine Stokke
Publisher: Zest Books ™
ISBN: 1541581989
Category : Young Adult Nonfiction
Languages : en
Pages : 373
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Book Description
Regine’s blog about living with Leukemia gained a huge following, and eventually became this book. She writes openly about emotional and physical aspects of her 15-month struggle to recover, and explains how her disease impacts her life. In the course of her illness, Regine has photography exhibits, goes to concerts, enjoys her friends ? and the lessons she learned have relevance for all of us. She died at home on December 3, 2009 with her family and cat by her side.
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: Wally Lamb
Publisher: Cambridge University Press
ISBN: 9780060391621
Category : Fiction
Languages : en
Pages : 884
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Book Description
With his stunning debut novel, She's Come Undone, Wally Lamb won the adulation of critics and readers with his mesmerizing tale of one woman's painful yet triumphant journey of self-discovery. Now, this brilliantly talented writer returns with I Know This Much Is True, a heartbreaking and poignant multigenerational saga of the reproductive bonds of destruction and the powerful force of forgiveness. A masterpiece that breathtakingly tells a story of alienation and connection, power and abuse, devastation and renewal--this novel is a contemporary retelling of an ancient Hindu myth. A proud king must confront his demons to achieve salvation. Change yourself, the myth instructs, and you will inhabit a renovated world. When you're the same brother of a schizophrenic identical twin, the tricky thing about saving yourself is the blood it leaves on your bands--the little inconvenience of the look-alike corpse at your feet. And if you're into both survival of the fittest and being your brother's keeper--if you've promised your dying mother--then say so long to sleep and hello to the middle of the night. Grab a book or a beer. Get used to Letterman's gap-toothed smile of the absurd, or the view of the bedroom ceiling, or the influence of random selection. Take it from a godless insomniac. Take it from the uncrazy twin--the guy who beat the biochemical rap. Dominick Birdsey's entire life has been compromised and constricted by anger and fear, by the paranoid schizophrenic twin brother he both deeply loves and resents, and by the past they shared with their adoptive father, Ray, a spit-and-polish ex-Navy man (the five-foot-six-inch sleeping giant who snoozed upstairs weekdays in the spare room and built submarines at night), and their long-suffering mother, Concettina, a timid woman with a harelip that made her shy and self-conscious: She holds a loose fist to her face to cover her defective mouth--her perpetual apology to the world for a birth defect over which she'd had no control. Born in the waning moments of 1949 and the opening minutes of 1950, the twins are physical mirror images who grow into separate yet connected entities: the seemingly strong and protective yet fearful Dominick, his mother's watchful "monkey"; and the seemingly weak and sweet yet noble Thomas, his mother's gentle "bunny." From childhood, Dominick fights for both separation and wholeness--and ultimately self-protection--in a house of fear dominated by Ray, a bully who abuses his power over these stepsons whose biological father is a mystery. I was still afraid of his anger but saw how he punished weakness--pounced on it. Out of self-preservation I hid my fear, Dominick confesses. As for Thomas, he just never knew how to play defense. He just didn't get it. But Dominick's talent for survival comes at an enormous cost, including the breakup of his marriage to the warm, beautiful Dessa, whom he still loves. And it will be put to the ultimate test when Thomas, a Bible-spouting zealot, commits an unthinkable act that threatens the tenuous balance of both his and Dominick's lives. To save himself, Dominick must confront not only the pain of his past but the dark secrets he has locked deep within himself, and the sins of his ancestors--a quest that will lead him beyond the confines of his blue-collar New England town to the volcanic foothills of Sicily 's Mount Etna, where his ambitious and vengefully proud grandfather and a namesake Domenico Tempesta, the sostegno del famiglia, was born. Each of the stories Ma told us about Papa reinforced the message that he was the boss, that he ruled the roost, that what he said went. Searching for answers, Dominick turns to the whispers of the dead, to the pages of his grandfather's handwritten memoir, The History of Domenico Onofrio Tempesta, a Great Man from Humble Beginnings. Rendered with touches of magic realism, Domenico's fablelike tale--in which monkeys enchant and religious statues weep--becomes the old man's confession--an unwitting legacy of contrition that reveals the truth's of Domenico's life, Dominick learns that power, wrongly used, defeats the oppressor as well as the oppressed, and now, picking through the humble shards of his deconstructed life, he will search for the courage and love to forgive, to expiate his and his ancestors' transgressions, and finally to rebuild himself beyond the haunted shadow of his twin. Set against the vivid panoply of twentieth-century America and filled with richly drawn, memorable characters, this deeply moving and thoroughly satisfying novel brings to light humanity's deepest needs and fears, our aloneness, our desire for love and acceptance, our struggle to survive at all costs. Joyous, mystical, and exquisitely written, I Know This Much Is True is an extraordinary reading experience that will leave no reader untouched.
Author: Kim Michele Richardson
Publisher: Sourcebooks, Inc.
ISBN: 1492671533
Category : Fiction
Languages : en
Pages : 306
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Book Description
RECOMMENDED BY DOLLY PARTON IN PEOPLE MAGAZINE! A NEW YORK TIMES BESTSELLER A USA TODAY BESTSELLER A LOS ANGELES TIMES BESTSELLER The bestselling historical fiction novel from Kim Michele Richardson, this is a novel following Cussy Mary, a packhorse librarian and her quest to bring books to the Appalachian community she loves, perfect for readers of William Kent Kreuger and Lisa Wingate. The perfect addition to your next book club! The hardscrabble folks of Troublesome Creek have to scrap for everything—everything except books, that is. Thanks to Roosevelt's Kentucky Pack Horse Library Project, Troublesome's got its very own traveling librarian, Cussy Mary Carter. Cussy's not only a book woman, however, she's also the last of her kind, her skin a shade of blue unlike most anyone else. Not everyone is keen on Cussy's family or the Library Project, and a Blue is often blamed for any whiff of trouble. If Cussy wants to bring the joy of books to the hill folks, she's going to have to confront prejudice as old as the Appalachias and suspicion as deep as the holler. Inspired by the true blue-skinned people of Kentucky and the brave and dedicated Kentucky Pack Horse library service of the 1930s, The Book Woman of Troublesome Creek is a story of raw courage, fierce strength, and one woman's belief that books can carry us anywhere—even back home. Look for The Book Woman's Daughter, the new novel from Kim Michele Richardson, out now! Other Bestselling Historical Fiction from Sourcebooks Landmark: The Mystery of Mrs. Christie by Marie Benedict The Engineer's Wife by Tracey Enerson Wood Sold on a Monday by Kristina McMorris
