My daughter has childhood dementia and may not live past 16

• Key Clinical Takeaways
• Childhood dementia represents a group of rare progressive neurodegenerative disorders with devastating outcomes—Sophia's case illustrates the severe functional decline possible, progressing from diagnosis at age 4 to profound cognitive and motor impairment by adolescence.
• Early diagnosis in childhood dementia, though challenging, allows families time for planning and potentially accessing genetic counselling and support services; many cases involve inherited metabolic or genetic conditions requiring specialist investigation.
• Clinicians should maintain high suspicion for progressive neurological decline in children presenting with cognitive regression, speech loss, or motor deterioration, as early recognition enables appropriate multidisciplinary management and family support despite limited disease-modifying treatments.

Diagnosed just before her fourth birthday, Sophia, now 15, can no longer speak and cannot walk unaided.

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