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Beyond the Pale
Folklore, Family and the Mystery of Our Hidden Genes
Emily's story begins on St. Stephen's Day, 2010, in St. John's, Newfoundland when she gives birth to a baby girl named Sadie Jane with a shock of snow-white hair. Within 3 months Sadie is diagnosed with albinism, a rare genetic disorder where pigment fails to form in the skin, hair and eyes, with accompanying maladies such as photophobia and partial blindness.Emily is drawn to understanding her child's differences by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.
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What Reviewers Are Saying
'Beyond the Pale is a brave, thoughtful, clear, and always graceful journey through the terrifying randomness of genetics and the unexpected ways genetic anomalies canmarknotjustchildren,butallthelivesaroundthem. Bestofall,itendswitha surprise-one that will interest anyone thinking of having a family.' Ian Brown, author of The Boy in the Moon: A father's search for his disabled son; 'Beyond the Pale is a powerful story about maternal love, the long reach of family and the ways -- good and evil - we react to disability.' Katherine Ashenburg, author of The Dirt on Clean: An Unsanitized History; 'A graceful, perceptive rendering of a misunderstood condition.'- Kirkus Reviews