Just Like Me!: A Book about a Girl with a Rare Disease PDF Download
Are you looking for read ebook online? Search for your book and save it on your Kindle device, PC, phones or tablets. Download Just Like Me!: A Book about a Girl with a Rare Disease PDF full book. Access full book title Just Like Me!: A Book about a Girl with a Rare Disease by Anne Rugari. Download full books in PDF and EPUB format.
Author: Anne Rugari
Publisher: Braughler Books, LLC
ISBN: 9780982218716
Category : Young Adult Nonfiction
Languages : en
Pages : 22
Get Book Here
Book Description
Author: Anne Rugari
Publisher: Braughler Books, LLC
ISBN: 9780982218716
Category : Young Adult Nonfiction
Languages : en
Pages : 22
Get Book Here
Book Description
Author: Taylor Kane
Publisher: Bookbaby
ISBN: 9781543978810
Category : Biography & Autobiography
Languages : en
Pages : 0
Get Book Here
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: Hayley Okines
Publisher: Accent Press
ISBN: 1908192569
Category : Health & Fitness
Languages : en
Pages : 208
Get Book Here
Book Description
Hayley Okines is like no other 13-year-old schoolgirl. In Old Before My Time, Hayley and her mum Kerry reflect on her unusual life. Share Hayley’s excitement as she travels the world meeting her pop heroes Kylie, Girls Aloud and Justin Bieber and her sadness as she loses her best friend to the disease at the age of 11. Now as she passes the age of 13 – the average life expectancy for a child with progeria – Hayley talks frankly about her hopes for the future and her pioneering drug trials in America which could unlock the secrets of ageing for everyone...
Author: Heather Lanier
Publisher: Penguin
ISBN: 0525559639
Category : Family & Relationships
Languages : en
Pages : 321
Get Book Here
Book Description
A New York Times Book Review Editors' Choice Kate Bowler's The Everything Happens Book Club Pick! Award-winning writer Heather Lanier's memoir about raising a child with a rare syndrome, defying the tyranny of normal, and embracing parenthood as a spiritual practice that breaks us open in the best of ways. Like many women of her generation, Heather Lanier did everything by the book when she was expecting her first child. She ate organic foods, recited affirmations, and drew up a birth plan for an unmedicated labor in the hopes that she could create a SuperBaby, an ultra-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. Not only had Lanier failed to produce a SuperBaby, she now fiercely loved a child that the world would sometimes reject. 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. They also confront society's attitudes toward disability and the often cruel assumptions made about Fiona's worth. Lanier realizes the biggest question is not, Will my daughter walk or talk? but, How can I best love my girl, just as she is? 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: Bree Rolfe
Publisher:
ISBN: 9781950730773
Category :
Languages : en
Pages : 64
Get Book Here
Book Description
WHO'S GOING TO LOVE THE DYING GIRL? by Bree Rolfe is a revolutionary debut poetry collection touching on society, loss, illness, and learning to grasp with things that cannot be changed. Rolfe executes verse with precision and fierceness: Desert Tarot and this is where people come to forget their mothers we envy darkness noble, devilish in its necessity leaves like tap dancers, skittered across stone slabs landed at the feet of strange cacti we are blind powerless in this blaze your grace failed when you needed to bury a memory in a shallow grave in West Texas we are burnt limitless in our catharsis you delved too far reoriented yourself beneath too much sky saw everything it contained a cup held by a hand that reached from heavens and stretched warnings in the offing we are not the salamander who can pass through fire unscathed but each cloud contained wings and you intend to wear a crown of your haunted thoughts
Author: Tiffany Schmidt
Publisher: Bloomsbury Publishing USA
ISBN: 0802738109
Category : Juvenile Fiction
Languages : en
Pages : 360
Get Book Here
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: Holly Whitaker
Publisher: Dial Press
ISBN: 1984825062
Category : Self-Help
Languages : en
Pages : 384
Get Book Here
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: Sarah Ramey
Publisher: Anchor
ISBN: 030774194X
Category : Biography & Autobiography
Languages : en
Pages : 434
Get Book Here
Book Description
The darkly funny memoir of Sarah Ramey’s years-long battle with a mysterious illness that doctors thought was all in her head—but wasn’t. In her harrowing, darkly funny, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological. The Lady's Handbook for Her Mysterious Illness is a memoir with a mission: to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions—autoimmune illnesses, fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more. Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connections to the state of our microbiomes. Her book will open eyes, change lives, and, ultimately, change medicine. The Lady's Handbook for Her Mysterious Illness is a revelation and an inspiration for millions of women whose legitimate health complaints are ignored.
Author: Wally Lamb
Publisher: Cambridge University Press
ISBN: 9780060391621
Category : Fiction
Languages : en
Pages : 884
Get Book Here
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: Heather Kamins
Publisher: National Geographic Books
ISBN: 0593109368
Category : Young Adult Fiction
Languages : en
Pages : 0
Get Book Here
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.
