Glasgow parents fight rare childhood dementia after 4-year-old diagnosis

In a Glasgow hospital, Donna and Darren Scott were stunned when five doctors told them their newborn granddaughter Sophia, 3‑y‑old, had been diagnosed with Sanfilippo syndrome, a rare childhood dementia. Doctors warned her life expectancy would be around 16 years. At 15 in February 2026, Sophia’s condition has progressed to speech loss and mobility decline. The Scotts say no support, funding or research are available for such cases, and mis‑diagnosis can delay help by two to three years. Scotland’s Alzheimer group estimates over 400 youngsters suffer childhood dementia, but public understanding remains low. Darren is now campaigning for trials and better awareness.