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‘In one scene, Celine Dion’s dancing. Next, she’s on a gurney’: making the film about the singer’s tragic condition
The star has Stiff Person Syndrome, meaning moments of elation can trigger potentially lethal spasms. We meet the director who captured the singer’s Las Vegas home life – and one shocking attack that almost killed her
Irene Taylor has travelled the world to tell stories about sexual abuse scandals and oil spills, staunch conservationists and blind Nepalese farmers trying to regain their sight. But decidedly cushier environs are the setting for her latest project: a documentary about Canadian pop singer Celine Dion and her struggle to contend with a rare neurological disorder called Stiff Person Syndrome (SPS). Photograph: Toni Anne Barson/Getty ImagesThe sequence, says Taylor, reveals the gutting truth about Dion’s life: happiness and the exhilaration of performance are a key trigger of her condition, which has at times threatened to kill her.
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