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 support 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?"

Pam said their daughter "doesn't communicate" like other children her age.

"We're trying to navigate that as a family, to support her and know what she wants.

"She won't specifically say, 'can I have a drink?' She will just show signs of what she wants."

Despite the condition, Pam said Tilly is "like a Tasmanian devil", adding she "is into everything" and "takes everything in her stride".

The family are now doing all they can to raise awareness and funds for research into the condition.

On Friday, Stuart and 12 relatives were attempting the Three Peaks Challenge - ascents of Yr Wyddfa (Snowdon), Scafell Pike and Ben Nevis in the shortest possible time.

"Now we are over the shock of what that [the condition] means for our family long term, the only thing we can do is raise as much awareness as we can by sharing events like this and raise as much money as we can to support the MPS Society," Stuart said.

"By doing this challenge, we hope to raise awareness of Tilly's condition as it is still pretty much unknown in the UK and hopefully raise funds to help the MPS Society continue supporting people and families affected by MPS, through research, support services and raising awareness."

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