BBC News
FamilyA Hull family said they wanted to raise “as much awareness as we can” after a five-year-old girl was diagnosed with a rare form of childhood dementia.
Stuart said the family was “absolutely devastated” when his daughter Tilly was diagnosed with MucoPolySaccharidosis (MPS3A) or Sanfilippo Syndrome.
The genetic condition affects the cells in the brain and has no cure.
Stuart and 12 family members are taking part in the Three Peaks challenge this weekend to raise money and awareness.
Tilly’s parents, Pam and Stuart, found they were both carriers of the gene that causes the life-limiting, progressive fatal disease which affects just one in 70,000 live births.
“Now we are over the shock of what that 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.”
BBC / Shirley HenryTilly is currently the only child in Hull with the condition and is being treated at the Royal Manchester Children’s Hospital.
Starting on Friday, the family will attempt to scale Yr Wyddfa (Snowdon), Scafell Pike and Ben Nevis in the shortest possible time.
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