Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes

I’ve never met or known about anyone—family or acquaintance —who shares my daughter’s difference. It can pass silently on from parent to child for hundreds of years.

Newfoundland, Canada in 2010, Emily 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.

Using her knowledge of folklore, Emily seeks to uncover the history and beliefs surrounding this life-changing diagnosis, and delves into* both the experiences and community that will shape her daughter’s adult life.

Part genetic travelogue and part parenting memoir, Emily’s exploration takes us to a faraway continent, through her own family tree and unearths cultural landscapes of poignant beauty, wonder and occasional horror.

‘A brave, thoughtful, clear, and always graceful journey through the terrifying randomness of genetics and the unexpected ways genetic anomalies can mark not just children, but all the lives around them.’
Ian Brown, author of The Boy in the Moon: A Father’s Search for his Disabled Son

‘A graceful, perceptive rendering of a misunderstood condition.’
Kirkus Reviews