Results 1 to 6 of 6
- Beyond the Pale : folklore, family, and the mystery of our hidden genes / by Urquhart, Emily.;
Includes bibliographical references.Like any new mother, Emily is thrilled when her first child, a daughter, is born. The baby, Sadie, is healthy and stunningly beautiful, with snow white hair and fair skin. Even the doctors and nurses can't help a second look at this magical child. But soon a darker current begins to emerge--something is amiss. After three months of testing, Sadie is diagnosed with albinism, a rare genetic condition. Emily, a folklore scholar and an award-winning journalist, is accustomed to understanding and processing the world through stories. With Sadie at her side, Emily researches the cultural beliefs surrounding albinism and finds a curious history of outlandish tales of magic, and of good and evil reaching back through time, along with present-day atrocities. In some parts of the world, people with albinism are stalked; their condition is seen to bring luck and health as well as danger and death. Investigating the different reactions, in different cultures, to those with albinism, Emily begins to see her child as a connection between worlds. Part memoir, part cultural critique, and part genetic travelogue, Beyond the Pale is a brave, intimate investigation into the secret histories that each of us carries in our genes and an inspiring and beautiful memoir about parenting a child with a disability--and building a better future for that child.- Subjects: Urquhart, Emily.; Urquhart, Sadie.; Albinos and albinism; Albinos and albinism; Albinos and albinism; Genetic disorders in children; Parents of children with disabilities;
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- Braced / by Gerber, Alyson.;
When twelve-year-old Rachel learns that her scoliosis has worsened and she will need to wear a back brace to keep her spine straight, she is devastated; afraid that she will not be able to play soccer, and terrified that she will not be able to hide her condition from her friends and classmates--but her mother is determined to spare her the spinal fusion surgery that she herself had as a teenager.LSC- Subjects: Scoliosis in children; Genetic disorders; Orthopedic braces; Mothers and daughters; Self-consciousness (Sensitivity); Families;
- Available copies: 1 / Total copies: 1
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- Mercies in disguise : a story of hope, a family's genetic destiny, and the science that rescued them / by Kolata, Gina Bari,1948-author.;
Includes bibliographical references and index."The phone rings. The doctor from California is on the line. "Are you ready Amanda?" The two people Amanda Baxley loves the most had begged her not to be tested-at least, not now. But she had to find out. If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you'd inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible? In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution-not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma-fertility specialists had created a way to spare the children through an expensive process. A work of narrative nonfiction in the tradition of the The Immortal Life of Henrietta Lacks, Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It's a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman-Amanda Baxley-who faced the future head on, determined to find a way to disrupt her family's destiny."--- Subjects: Medical genetics.; Genetic disorders.; Genetic screening;
- Available copies: 1 / Total copies: 1
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- The last shadow / by Card, Orson Scott,author.;
"Orson Scott Card's The Last Shadow is the long-awaited conclusion to both the original Ender series and the Ender's Shadow series, as the children of Ender and Bean solve the great problem of the Ender Universe-the deadly virus they call the descolada, which is incurable and will kill all of humanity if it were allowed to escape from Lusitania. One planet. Three sapient species living peacefully together. And one deadly virus that could wipe out every world in the Starways Congress, killing billions. Is the only answer another great Xenocide?"--- Subjects: Science fiction.; Bean (Fictitious character from Card); Brothers and sisters; Genetics, Experimental; Growth disorders; Life on other planets; Survival; Viruses;
- Available copies: 1 / Total copies: 1
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- My own blood : a memoir / by Bristowe, Ashley,author.;
"When their second child, Alexander, is diagnosed with a rare genetic disorder, doctors tell Ashley Bristowe and her husband that the boy won't walk, or even talk--that he is profoundly disabled. Stunned and reeling, Ashley researches a disorder so new it's just been named--Kleefstra Syndrome--and she finds little hope and a maze of obstacles. Then she comes across the US-based 'Institutes, ' which have been working to improve the lives of brain-injured children for decades. Recruiting volunteers, organizing therapy, juggling a million tests and appointments, even fundraising as the family falls deep into debt, Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life, and her own. The ending is happy: he will never be a 'normal' boy, but Alexander talks, he walks, he swims, he plays the piano (badly) and he goes to school. This victory isn't clean and it's far from pretty; the personal toll on Ashley is devastating. 'It takes a village, ' people say, but too much of their village is uncomfortable with her son's difference, the therapy regimen's demands and the family's bottomless need. The health and provincial services bureaucracy set them a maddening set of hoops to jump through, showing how disabled children and their families languish because of criminally low expectations about what can be done to help. My Own Blood is an uplifting story, but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help. It's the story of a woman who lost everything she'd once been--a professional, an optimist, a joker, a capable adult--in sacrifice to her son. An honest account of a woman's life turned upside down."-- Provided by publisher.- Subjects: Biographies.; Bristowe, Ashley; Bristowe, Ashley.; Children with disabilities; Children with disabilities; Children with disabilities; Children with disabilities; Families.; Mothers of children with disabilities; Parents of children with disabilities;
- Available copies: 1 / Total copies: 1
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- The last shadow [sound recording] / by Card, Orson Scott,author,narrator.; Macmillan Audio (Firm),publisher.;
Read by Orson Scott Card, Emily Rankin, Gabrielle de Cuir, John Rubinstein, Justine Eyre, Kirby Heyborne, Scott Brick, Stefan Rudnicki, Judy Young."Orson Scott Card's The Last Shadow is the long-awaited conclusion to both the original Ender series and the Ender's Shadow series, as the children of Ender and Bean solve the great problem of the Ender Universe-the deadly virus they call the descolada, which is incurable and will kill all of humanity if it were allowed to escape from Lusitania. One planet. Three sapient species living peacefully together. And one deadly virus that could wipe out every world in the Starways Congress, killing billions. Is the only answer another great Xenocide?"--- Subjects: Audiobooks.; Science fiction.; Bean (Fictitious character from Card); Brothers and sisters; Genetics, Experimental; Growth disorders; Life on other planets; Survival; Viruses;
- Available copies: 1 / Total copies: 1
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Results 1 to 6 of 6