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  • Friday, 30 January 2026

Devastated UK family watches 5-year-old dying from rare childhood dementia; hundreds of seizures daily

Five-year-old Holly Nayler from Essex has CLN2 Batten disease, a rare and fatal form of childhood dementia that causes rapid neurological decline and frequent seizures. While an NHS-funded treatment cannot cure the condition, it has slowed the loss of her abilities. As access to the drug faces uncertainty, her family is calling for awareness and continued support.

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