Charlotte Colley was diagnosed with Cockayne syndrome, one of more than 150 rare genetic disorders scientists have identified as causing dementia in children.
Mostly, Charlotte Colley is just like any other two-year-old. She goes to daycare, loves splashing about in the pool or at the beach, and has no problems letting her parents Brett Colley and Sarah Matthews know exactly what she wants.
The conditions are all marked by a period of development before the often rapid onset of symptoms of premature ageing. Life expectancy is just nine years, and 70 per cent don’t live to see their 18th birthdays. Megan Maack, who commissioned the research as chief executive and director of the Childhood Dementia Initiative, said grouping the conditions together for the first time would help researchers and policymakers understand the scale of the problem.“Historically, the hundred-plus conditions that cause childhood dementia have been understood in isolation, and so the way we research, the way we care, the way we set policy, has been very fragmented,” she said.
Matthews, from Dulwich Hill in Sydney, said she was proud of the way Australia’s medical system had supported their daughter, but the past two years had been a constant search for answers involving dozens of medical specialists and few explanations.
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