Girl, 5, diagnosed with rare childhood dementia

The parents of a five-year-old girl diagnosed with a rare form of childhood dementia have told of their heartbreak.

Stuart and Pam said they were "devastated" when doctors told them Tilly has MucoPolySaccharidosis (MPS3A) or Sanfilippo Syndrome - a genetic condition affecting the cells in the brain. It has no cure.

Pam added: "They picked up at nursery that she wasn't speaking as much as the other children of her age. From a developmental point of view, she is 18 months to 24 months behind where she should be.

"We are just trying to navigate that as a family to see how we can her."

Tilly, who was diagnosed in October 2023, is currently the only child in Hull with the condition and is being treated at the Royal Manchester Children's Hospital.

Pam and Stuart discovered they were both carriers of the gene that causes the life-limiting, progressive fatal disease which affects just one in 70,000 live births.

"We were both devastated," she said. "Then the shock happens. What does this mean for our family":[]}