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

Just Like Me!: A Book about a Girl with a Rare Disease
Title Just Like Me!: A Book about a Girl with a Rare Disease PDF eBook
Author Anne Rugari
Publisher Braughler Books, LLC
Total Pages 22
Release 2018-10-30
Genre Young Adult Nonfiction
ISBN 9780982218716

Download Just Like Me!: A Book about a Girl with a Rare Disease Book in PDF, Epub and Kindle

The Moth Girl

The Moth Girl
Title The Moth Girl PDF eBook
Author Heather Kamins
Publisher Penguin
Total Pages 273
Release 2022-03-08
Genre Young Adult Fiction
ISBN 0593109368

Download The Moth Girl Book in PDF, Epub and Kindle

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.

Rare Like Us

Rare Like Us
Title Rare Like Us PDF eBook
Author Taylor Kane
Publisher Bookbaby
Total Pages 0
Release 2019-09-02
Genre Biography & Autobiography
ISBN 9781543978810

Download Rare Like Us Book in PDF, Epub and Kindle

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.

Raising a Rare Girl

Raising a Rare Girl
Title Raising a Rare Girl PDF eBook
Author Heather Lanier
Publisher Penguin
Total Pages 321
Release 2021-07-06
Genre Family & Relationships
ISBN 0525559655

Download Raising a Rare Girl Book in PDF, Epub and Kindle

“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.

Quit Like a Woman

Quit Like a Woman
Title Quit Like a Woman PDF eBook
Author Holly Whitaker
Publisher Dial Press
Total Pages 384
Release 2019-12-31
Genre Self-Help
ISBN 1984825062

Download Quit Like a Woman Book in PDF, Epub and Kindle

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.

Blush

Blush
Title Blush PDF eBook
Author Danielle Ripley-Burgess
Publisher
Total Pages 352
Release 2020-09-15
Genre
ISBN 9781646451265

Download Blush Book in PDF, Epub and Kindle

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.

Regine's Book

Regine's Book
Title Regine's Book PDF eBook
Author Regine Stokke
Publisher Zest Books ™
Total Pages 373
Release 2014-01-01
Genre Young Adult Nonfiction
ISBN 1541581989

Download Regine's Book Book in PDF, Epub and Kindle

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.