Download or read book Extraordinary A Book for Children with Rare Diseases Mandarin written by Evren And Kara Ayik and published by Kara Ayik. This book was released on 2022-03-03 with total page 0 pages. 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.
Download or read book Orphan written by Philip Reilly and published by . This book was released on 2015 with total page 0 pages. 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
Download or read book An Ordinary Day written by Karen Haberberg and published by powerHouse Books. This book was released on 2017-10-24 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences. Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions. The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.
Download or read book Old Before My Time written by Hayley Okines and published by Headline Accent. This book was released on 2011-10-27 with total page 163 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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...
Download or read book Chasing My Cure written by David Fajgenbaum and published by Ballantine Books. This book was released on 2019-09-10 with total page 266 pages. Available in PDF, EPUB and Kindle. Book excerpt: LOS ANGELES TIMES AND PUBLISHERS WEEKLY BESTSELLER • The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research. “A wonderful and moving chronicle of a doctor’s relentless pursuit, this book serves both patients and physicians in demystifying the science that lies behind medicine.”—Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies and The Gene David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure “A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”—Angela Duckworth, #1 New York Times bestselling author of Grit “[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum’s stirring account of his illness will inspire readers.”—Publishers Weekly
Download or read book Extraordinary Means written by Robyn Schneider and published by Simon and Schuster. This book was released on 2015-06-04 with total page 295 pages. Available in PDF, EPUB and Kindle. Book excerpt: John Green's The Fault in Our Stars meets Rainbow Rowell's Eleanor & Park in this darkly funny novel from the critically acclaimed author of The Beginning of Everything. Up until his diagnosis, Lane lived a fairly predictable life. When he's sent to Latham House, a boarding school for sick teens, Lane thinks his life may as well be over. But when he meets Sadie and her friends - a group of eccentric troublemakers - he realises that maybe getting sick is just the beginning. That illness doesn't have to define you, and that falling in love is its own cure. Robyn Schneider's Extraordinary Means is a heart-wrenching yet ultimately hopeful about true friendships, ill-fated love and the rare miracle of second chances. Praise for Extraordinary Means 'This captivating book about life, death, fear, and second chances will fly off the shelves' VOYA 'Schneider’s subtlety, combined with themes about learning to live life fully, makes this an easy recommendation for those seeking titles similar in premise to John Green’s The Fault in Our Stars' School Library Journal 'The perfect read-next for fans of the sick-lit trend and readers looking for a tear-stained romance' Bulletin of the Center for Children’s Books 'Fans of John Green’s blockbuster The Fault in Our Stars who are eager for more of that kind of story will likely be satisfied.' Booklist
Download or read book Anna s Big Week written by Rene Pierpont (Pediatric Neuropsychologist) and published by Createspace Independent Publishing Platform. This book was released on 2018-01-06 with total page 40 pages. Available in PDF, EPUB and Kindle. Book excerpt: Anna is a spunky 9-year-old girl who loves acting and drawing Anna has Noonan syndrome, a genetic condition that affects how her body grows. Join Anna, her mother and her dog Sammy as they go through a busy and adventure-filled week, ad see what living with Noonan syndrome means for Anna!
Download or read book Rare Is Everywhere written by Deborah Katz and published by . This book was released on 2020-02-24 with total page 34 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare Is Everywhere takes readers on a journey through the animal kingdom, revealing that grasshoppers can be pink, tigers can be white, and lobsters can be blue. Showcasing eleven incredible animals through vibrant illustrations and playful poetry, the book skillfully blends science with art and encourages children to recognize and accept diversity in themselves and in others. Each page features a rare animal alongside its everyday counterpart, and accompanying rhyming text reveals both their shared traits and their differences. With a joke corner to further capture children's imagination and a glossary that provides more information about each animal and the genetic changes that shape their appearance, Rare Is Everywhere is not only a stunning picture book but also a valuable resource. All ages, and species, will enjoy this book.
Download or read book Raising Jess written by Vickie Rubin and published by Page Publishing Inc. This book was released on 2021-08-02 with total page 127 pages. Available in PDF, EPUB and Kindle. Book excerpt: 2022 Readers' Favorite Gold Medal Winner in Non-Fiction - Memoir Genre Award-Winning Memoir “Courageously exploratory, making for a truly enlightening read." (Kirkus Reviews) Raising Jess is the powerful story of one family’s survival when faced with adversity. Written with compassion, honesty, and humor, it tells of a family changed forever by the birth of a child with a rare chromosome deletion and their courageous decision to choose hope. Facing the challenges of caring for her daughter, marriage struggles, and the question of having more children, Vickie Rubin gives a glimpse into the world of her family and transformation while Raising Jess. This beautiful, gripping memoir will delight and leave you wanting more. "This is an inspiring story of tragedy and triumph, brilliantly and powerfully told. I highly recommend it." - Ashley Adams, Author “This is a triumphant tale.” - Cathy Shields, Author" "A heartwarming, compassionate story. This story will bring tears to the eyes of readers as they are educated and enraptured by one family’s journey with a child with special needs.” (5-Star Review by Emily-Jane Hills Orford for Readers' Favorite) “Couldn’t put it down! Raising Jess is an amazing book! Vickie Rubin’s writing is masterful! Highly recommend.” - Mike Steklof, Ed. D. “Beautiful Insightful Narrative That Resonates Deeply. I feel enlightened, inspired, hopeful and transformed by Vickie's story.” - Janet G. “Beautifully written and a must-read for anyone that knows someone with disabilities or wants to know a family’s perspective.” - Jill G. “I couldn’t put it down. Get a copy of this book—so pure, raw, and beautiful.” - Ashleigh Bussinger “Vickie reveals her Soul to the reader. A Must-Read for All” - Lori N. Vickie Schlanger Rubin, M.S Ed., three-time award-winning author, contributes essays to Newsweek, Buffalo News Opinion, and blogs worldwide. Vickie is an experienced public speaker and passionate advocate for families of children with disabilities. Her blog, Vickie's Views (www.vickierubin.com), gives a heartwarming and humorous view of everyday life.
Download or read book The Extraordinary Eye written by Taline Dorna and published by . This book was released on 2021-03-07 with total page 32 pages. Available in PDF, EPUB and Kindle. Book excerpt: A family's journey of how an incredible young boy's cancer diagnosis leads to bravery, self discovery, and a new extraordinary eye! An illustrated children's story written to aid patients, and help their siblings understand retinoblastoma from diagnosis, to enucleation, to living with an ocular prosthesis. Join this family as they learn of a child's cancer diagnosis at the doctors office, treatment at the hospital, and acceptance of a new prosthesis at home. Meet all the wonderful doctors, ophthalmologists, nurses and ocularists that help out along the way. About the author Taline Dorna is an elementary teacher (grade one), by profession; and a mother to 3 children under the age of 6. When her youngest was 5 months old, he was diagnosed with retinoblastoma (a very rare eye cancer). She searched high and low for story books that feature a child with a prosthetic eye and they were few and far between. As a result, she decided to write a children's story book that could be used in a classroom setting as a social story; or for newly diagnosed patients, as well as a way to spread general awareness about retinoblastoma.
Download or read book Patient written by Ben Watt and published by Open Road + Grove/Atlantic. This book was released on 2014-10-15 with total page 124 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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
Download or read book The Family Gene written by Joselin Linder and published by HarperCollins. This book was released on 2017-03-14 with total page 245 pages. Available in PDF, EPUB and Kindle. Book excerpt: A riveting medical mystery about a young woman’s quest to uncover the truth about her likely fatal genetic disorder that opens a window onto the exploding field of genomic medicine When Joselin Linder was in her twenties her legs suddenly started to swell. After years of misdiagnoses, doctors discovered a deadly blockage in her liver. Struggling to find an explanation for her unusual condition, Joselin compared the medical chart of her father—who had died from a mysterious disease, ten years prior—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, this was more than a fluke. Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School, for help. Dr. Seidman had been working on her family’s case for twenty years and had finally confirmed that fourteen of Joselin’s relatives carried something called a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand new genetic mutation. Here, Joselin tells the story of their gene: the lives it claimed and the future of genomic medicine with the potential to save those that remain. Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with the Harvard doctor, Joselin pieces together the lineage of this deadly gene to write a gripping and unforgettable exploration of family, history, and love. A compelling chronicle of survival and perseverance, The Family Gene is an important story of a young woman reckoning with her father’s death, her own mortality, and her ethical obligations to herself and those closest to her.
Download or read book Conscience and Courage written by John Hawkins and published by . This book was released on 2019 with total page 254 pages. Available in PDF, EPUB and Kindle. Book excerpt: Henri Termeer was one of the first of a pioneering group of business executives who built a disparate group of fledgling companies into a biotech industry that has driven decades of therapeutic innovation. During a 28-year career at Genzyme, including 26 years as CEO, he created a process of drug development that for the first time was patient-centered. He also helped forge biotech's public policy agenda and inspired a generation of entrepreneurs to take on large and important challenges. An extraordinary number of today's biotech leaders were directly mentored by Termeer. His own leadership was iconoclastic: He broke rules and took risks, setting ambitious goals and finding novel ways to reach them. In doing so he transformed an industry and brought hope to patients with a range of diseases previously deemed too rare to justify the investment needed to support the development of specific therapies. In Conscience and Courage, John Hawkins, an insightful analyst of healthcare leaders, reveals the philosophy, principles, methods, and habits of a prominent and successful CEO who defied convention to create an investor-owned global enterprise that put people before profits and improved the lives of thousands of forgotten patients.
Download or read book Hidden Valley Road written by Robert Kolker and published by Anchor. This book was released on 2020-04-07 with total page 427 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • OPRAH’S BOOK CLUB PICK • ONE OF GQ's TOP 50 BOOKS OF LITERARY JOURNALISM IN THE 21st CENTURY • The heartrending story of a midcentury American family with twelve children, six of them diagnosed with schizophrenia, that became science's great hope in the quest to understand the disease. "Reads like a medical detective journey and sheds light on a topic so many of us face: mental illness." —Oprah Winfrey Don and Mimi Galvin seemed to be living the American dream. After World War II, Don's work with the Air Force brought them to Colorado, where their twelve children perfectly spanned the baby boom: the oldest born in 1945, the youngest in 1965. In those years, there was an established script for a family like the Galvins--aspiration, hard work, upward mobility, domestic harmony--and they worked hard to play their parts. But behind the scenes was a different story: psychological breakdown, sudden shocking violence, hidden abuse. By the mid-1970s, six of the ten Galvin boys, one after another, were diagnosed as schizophrenic. How could all this happen to one family? What took place inside the house on Hidden Valley Road was so extraordinary that the Galvins became one of the first families to be studied by the National Institute of Mental Health. Their story offers a shadow history of the science of schizophrenia, from the era of institutionalization, lobotomy, and the schizophrenogenic mother to the search for genetic markers for the disease, always amid profound disagreements about the nature of the illness itself. And unbeknownst to the Galvins, samples of their DNA informed decades of genetic research that continues today, offering paths to treatment, prediction, and even eradication of the disease for future generations. With clarity and compassion, bestselling and award-winning author Robert Kolker uncovers one family's unforgettable legacy of suffering, love, and hope.
Download or read book The Inheritance written by Niki Kapsambelis and published by Simon and Schuster. This book was released on 2017-03-07 with total page 407 pages. Available in PDF, EPUB and Kindle. Book excerpt: This gripping story of the doctors at the forefront of Alzheimer’s research and the courageous North Dakota family whose rare genetic code is helping to understand our most feared diseases is “excellent, accessible...A science text that reads like a mystery and treats its subjects with humanity and sympathy” (Library Journal, starred review). Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can. The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in one hundred percent of cases, and has a fifty percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, daughter Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure. Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. “A compelling narrative…and an educational and emotional chronicle” (Kirkus Reviews, starred review), their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this inspiring race against time redefines courage in the face of this most pervasive and mysterious disease.
Download or read book Chasing Miracles written by John Crowley and published by Harper Collins. This book was released on 2010-01-12 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: When John and Aileen Crowley learned that their two youngest children had a rare and little understood genetic disorder, they didn't hope for miracles: they made them happen. In 1998, 15-month-old Megan and 4-month-old Patrick were diagnosed with Pompe disease, a rare and fatal neuromuscular disorder that affects only a few thousand children worldwide, usually leaving them with little to no muscle function, enlarged hearts, and severe difficulty breathing. The Crowleys were told to take their children home and "enjoy their short time together...there is nothing that can be done." Raised in a blue-collar neighborhood in northern New Jersey, John Crowley, a recent Harvard MBA graduate working at Bristol-Myers Squibb, was just beginning to taste success in corporate America. But now he was absolutely determined to find a treatment to save his children's lives. Frustrated with the pace of Pompe research, Crowley walked away from the corporate world at the age of 31 to help co-found a start-up biotech company, focused exclusively on producing a lifesaving medicine. In Chasing Miracles, John Crowley writes from his heart about how he and his wife set out to do "whatever it takes" against phenomenal odds to help Megan and Patrick first to survive, and then to thrive—and to keep their family, including oldest son John Jr., together and their marriage strong. He tells about learning to ask for help, about not losing faith, about coping with adversity, about the generosity and kindness of others, and, most importantly, about what it means to never, never quit. As Aileen Crowley writes in her foreword, "This book is our family's attempt to share much of what we have learned, especially from our children, who have taught us more about life and love than we have ever taught them."
Download or read book The Easter Storybook written by Laura Richie and published by David C Cook. This book was released on 2020-01-01 with total page 96 pages. Available in PDF, EPUB and Kindle. Book excerpt: Starting with Jesus’ time in the temple as a boy and ending with His appearances after the resurrection, The Easter Storybook invites readers into the big picture of God’s love. Each of the 40 full-color, beautifully illustrated stories includes a Bible passage and a conversational question to guide families through the Easter season together. Unlike other children’s Easter books, The Easter Storybook focuses not just on Jesus’ last days but on the journey of His whole life leading to the joy of Easter morning. Every story will give children a glimpse into Jesus’ identity—as Teacher, Good Shepherd, Savior, and King—making this a rich book to read throughout the year. The Easter Storybook explains who Jesus is, what He did, and why His death and resurrection matter, in a simple way that children ages 4–8 can understand and remember. As a fitting companion to the bestselling The Advent Storybook, this book is a wonderful way to discover as a family why Jesus came to earth as Rescuer, Redeemer, and Friend.
