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This is the inspiring account of Andy Lipman's life with cystic fibrosis and the candid story of a young man finding his way in the world, despite big challenges. Cystic fibrosis affects seventy thousand people worldwide. In the United States, thirty thousand people live with cystic fibrosis and each year several hundred die as a result. When I was born in the early seventies, life expectancy for those with CF was in the teens. It is Andy's declaration that everyone, including medical professionals who told him he could not live past the age of 25, was wrong. This is the story of a competitive person with a life-threatening disease-the story of a person with hopes and dreams, just like everyone else, who must also deal with extraordinary circumstances. Andy writes about how he has dealt with depression for most of his life and the negative effects it has had on his family and loved ones. His purpose in writing this is to raise awareness about cystic fibrosis and to help fund cystic fibrosis research.
Using Jennifer Hale's own writings and images as well as interviews with Jennifer's parents, Evan Michael Codell and Donna Codell, presents the life and experiences of Jennifer Hale and her family as Jennifer lived with cystic fibrosis.
For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for twin girls with the disease, what began as a family’s stubborn determination grew into a miracle. The tragedy of CF has been touchingly recounted in such books as Frank Deford’s Alex: The Life of a Child, but The Power of Two is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their lifelong struggle to pursue normal lives with cystic fibrosis while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins’ bicultural heritage—Japanese and German—influenced the way they coped with these challenges. Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, Isabel and Anabel endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But they tell how, in the face of innumerable setbacks, their deep-seated dependence on each other allowed them to survive long enough to reap the benefits of the miraculous lung transplants that marked a crossroads in their lives: “We have an old life—one of growing up with chronic illness—and a new life—one of opportunities and gifts we have never imagined before.” In this memoir, they pay tribute to the people who shaped their experience. The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. It conveys an important message to both popular and professional readers as it addresses key psychosocial issues in chronic illness throughout the sufferer’s lifespan and illuminates the human side of advances in biotechnology. Even as gene therapy and stem cell research increase the chances for eradicating CF, this stirring account portrays its effects on one family that refused to give up. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.
A father’s moving memoir of cystic fibrosis “captures a brave child’s legacy as well as the continuing fight against the genetic disease” (TheNew York Times). In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal. Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girl—going to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight. Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughter’s birth. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal. Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying “I love you” so her brother could listen to her whenever he wanted, and as heartrending as the young girl’s tragic, dawning realization of her own very tenuous mortality, and her parents’ difficulty in trying to explain why. Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
A vibrant, intimate, hypnotic portrait of one woman's life, from an important new writer Tess Lohan is the kind of woman that we meet and fail to notice every day. A single mother. A nurse. A quiet woman, who nonetheless feels things acutely—a woman with tumultuous emotions and few people to share them with. Academy Street is Mary Costello's luminous portrait of a whole life. It follows Tess from her girlhood in western Ireland through her relocation to America and her life there, concluding with a moving reencounter with her Irish family after forty years of exile. The novel has a hypnotic pull and a steadily mounting emotional force. It speaks of disappointments but also of great joy. It shows how the signal events of the last half century affect the course of a life lived in New York City. Anne Enright has said that Costello's first collection of stories, The China Factory, "has the feel of work that refused to be abandoned; of stories that were written for the sake of getting something important right . . . Her writing has the kind of urgency that the great problems demand" (The Guardian). Academy Street is driven by this same urgency. In sentence after sentence it captures the rhythm and intensity of inner life.
"First published in 2015 by Liberties Press."
Breathe: Living a Purposeful Life with Cystic Fibrosis (c), is the inspirational autobiography of Jake Shavers. At 41 years old, Jake Shavers is beating the odds. Born with Cystic Fibrosis, a genetic chronic disease that affects the lungs and digestive system, he bravely fights the debilitating illness. Given the statistics, he was not expected to live to see the age of 20. Even now, he has faced and conquered near-death experiences 5 times. Against all odds, including a double lung transplant and a kidney transplant, Jake continues to thrive. His positive attitude and conviction in his faith gave him the strength and courage to compete in a half-marathon, exercise daily and give back through his work with children and adults facing similar situations. Jake attributes his success to his faith and knows he is here for a very special reason.
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