Not telling your child that this hereditary condition is in the family can be devastating later onOn a lazy Sunday morning in May last year, Isobel Lloyd was at her boyfriend ’s house, having coffee with his mum. The conversation had worked around to Lloyd’s grandma – her mother’s mother – who’d died in her 50s, when Lloyd was very young. Lloyd’s only memories of her had been hospice visits where her grandma lay bedbound, unable to talk or swallow, with no control over how her body moved. Lloyd had forgotten the name of her grandma’s disease, hadn’t thought about it in years. Like most 20-year-olds, she was future-focused – a student from Yorkshire, keen on her studies, in love with her boyfriend of four years.Sitting in his family kitchen, they began reeling off degene...


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