A child born with albinism inspires a concerned mother to uncover its genetic origins.
Canadian folklorist Urquhart’s affecting debut memoir centers around Sadie, born in 2010 with a rare skin pigmentation disorder resulting in an ethereal whiteness of the skin, hair and eyes, along with a host of maladies including photophobia and partial blindness. Together with compassionate input from her biologist husband, Urquhart presents a creative interpretation of her journey through folkloric beliefs and fables to obtain a new understanding and valuing of Sadie’s condition, whether through a new ophthalmologist or the family’s move to western Canada. As Sadie progressed through her first year, the author immersed herself in noncompetitive support groups, chatted with artistic acquaintances and networked at an international albinism conference populated by parents accompanying their albino children with “the inaudible swish of white canes sweeping side to side across the floor.” From more seasoned parents, Urquhart gleaned the heartbreaking reality of bullying and peer exclusion due to an albino child’s appearance and limited vision, while others offered encouragement to simply embrace their imperfections and abnormalities. Though she met hopeful test subjects for new pigmentation drug trials and briefly explored issues of genetic screening, darker chapters detail an unsettling voyage to Tanzania, where albinism can spur eerie, witchcraft-inspired atrocities. Throughout her three-year odyssey, Urquhart voraciously digested familial, archival and census material, searching out medical specialists and “tangential ancestors” in hopes of unraveling the biological nature of Sadie’s condition. A weathered photograph album renewed interest in her paternal family tree, which led to a relative who personified a “twist in my genetic lineage.” Throughout, the author remains intensely focused on comprehending the complexities of hereditary genetics while appreciating her daughter’s “unusual beauty.”
A graceful, perceptive rendering of a misunderstood condition.