My daughter has childhood dementia and may not live past 16

Just before her fourth birthday Sophia Scott's parents were told she had a condition that causes childhood dementia. They walked away with a single sheet of paper and were advised to make the most of the time they had left with her. Now 15, Sophia can no longer speak and cannot walk unaided. She may not live past her 16th birthday. Her dad Darren and mum Amanda are now separated but both help care for Sophia. Darren juggles this with his job as a hospitality manager while Amanda left her job to look after her. He also campaigns to raise awareness of Sophia's condition, Sanfilippo syndrome. It is an inherited, rare, progressive and incurable condition. Sophia's early childhood was happy. Darren, from Glasgow, said she loved dancing, cooking, playing and going to school. Although there were some delays in her development, there was nothing to suggest the scale of what was to come. "We didn't have any concerns there was something remotely wrong," he told BBC Scotland News. "There were some delays on her markers, but we didn't think anything this huge. "We were basically given a life sentence, this progressive incurable disease was going to take our only child. "We were given a piece o

Apr 1, 2026 → Apr 1, 2026