Extraordinary A Book For Children With Rare Diseases
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Extraordinary! A Book for Children with Rare Diseases (Mandarin) by Evren And Kara Ayik Pdf
(Mandarin) 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.
Extraordinary! A Book for Children with Rare Diseases by Evren Ayik,Kara Ayik Pdf
What makes a child with a rare disease extraordinary? Explore the answer to this question while sharing an illustrated conversation with Evren Ayik about what he has learned while growing up with his own rare disease. Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases 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. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader's developmental needs. The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare genetic disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Extraordinary! is intended to celebrate the diversity and beauty inherent in all children around the world. 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.
"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
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.
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.
Anna's Big Week by Rene Pierpont (Pediatric Neuropsychologist),Saakshi Daswani Pdf
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!
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...
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. Extraordinary Means is a darkly funny story about true friendships, ill-fated love and the rare miracle of second chances. Everyone is raving about SEVERED HEADS, BROKEN HEARTS! 'I couldn't help but think of John Green's novels - I think his fans will eat this up.' Publishers Weekly 'Heartbreaking and hilarious. I have no doubt that girls everywhere are going to fall madly, deeply, hopelessly in love with Ezra Faulkner.' Sarah Mlynowski, NYT bestselling author. 'Maybe it's time to expand your list of literary crushes to include someone other than Augustus Waters.' MTV.com 'Up there with John Green - and it's a delight to read… the ending absolutely blew me away, being unpredictable, powerful, and altogether fantastic.' The Bookbag 'fun, touching and absolutely hilarious' Sugarscape 'original and radiant' Daisy Chain Book Reviews
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
An unforgettable and inspiring memoir of an extraordinary doctor who is saving lives in a most unconventional way. Ask Me Why I Hurt is the touching and revealing first-person account of the remarkable work of Dr. Randy Christensen. Trained as a pediatrician, he works not in a typical hospital setting but, rather, in a 38-foot Winnebago that has been refitted as a doctor’s office on wheels. His patients are the city’s homeless adolescents and children. In the shadow of an affluent American city, Dr. Christensen has dedicated his life to caring for society's throwaway kids—the often-abused, unloved children who live on the streets without access to proper health care, all the while fending off constant threats from thugs, gangs, pimps, and other predators. With the Winnebago as his moveable medical center, Christensen and his team travel around the outskirts of Phoenix, attending to the children and teens who need him most. With tenderness and humor, Dr. Christensen chronicles everything from the struggles of the van’s early beginnings, to the support system it became for the kids, and the ultimate recognition it has achieved over the years. Along with his immense professional challenges, he also describes the trials and joys he faces while raising a growing family with his wife Amy. By turns poignant, heartbreaking, and charming, Dr. Christensen's story is a gripping and rich memoir of his work and family, one of those rare books that stays with you long after you’ve turned the last page.
OPRAH'S BOOK CLUB PICK #1 NEW YORK TIMES BESTSELLER NATIONAL BESTSELLER The heartrending story of a mid-century American family with twelve children, six of them diagnosed with schizophrenia, that became science's great hope in the quest to understand--even cure--the disease. Don and Mimi Galvin seemed to be living the dream. After World War II, Don's work with the US 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 were diagnosed as schizophrenic. How could all this happen in 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 Institutes of Mental Health. Their shocking story also offers a shadow history of the science of schizophrenia, from the era of institutionalization, lobotomy and the premise of the schizophrenogenic mother, to the search for genetic markers for the disease, always amidst profound disagreements about the nature of the illness itself. Unknown to the Galvins, samples of their DNA informed decades of genetic research that continues today, offering paths to treatment and even the possibility of the 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.
An expert in pulmonary medicine shares a wide-ranging exploration of the human lung: the organ that explains our origins and holds the keys to our future. We take an average of 7.5 million breaths a year and some 600 million in our lifetime, and what goes on in our body each time oxygen is taken in and carbon dioxide expelled is nothing short of miraculous. “Our lungs are the lynchpin between our bodies and the outside world,” writes pulmonologist Michael Stephen. And yet, we too often take our lungs for granted. In Breath Taking, Stephen sheds much-needed light on our extraordinary lungs. He relates the history of oxygen on Earth and the evolutionary origins of breathing, and explores the healing power of breath and its spiritual potential. Stephen interweaves his narrative with scientific history, such as the development of the lung transplant, and poignant human stories, including his own frantic attempts to engage his son’s lungs at birth. Despite great advances in science, our lungs are ever more threatened. Asthma is on the rise, increasing anxiety leaves us vulnerable to disease, and COVID-19 has revealed that vulnerability in historic ways. Breath Taking offers inspiration and hope, inspiration, and vital perspective to us all.
A hospital is preserved, afloat, after the Earth is flooded beneath seven miles of water. Inside, doctors and patients are left to remember the world they've lost and to imagine one to come. At the center, Jemma Claflin, a medical student, finds herself gifted with strange powers and a frightening destiny.
