Ed Sheeran and Disney World: Terminally ill Cambridge girl ticks off bucket list

Caitlin Passey, who was losing her vision, recognised Ed Sheeran by his voice

The family of a nine-year-old with a terminal condition have been fundraising to tick items off a bucket list they created together.

Caitlin Passey, who lives in Cambridge, was diagnosed with Juvenile Batten Disease in October 2021.

The inherited disorder affects the nervous system. Her father likened the illness to "childhood dementia."

Items ticked off the list include a Disney World trip, being a mascot for the Lionesses and meeting Ed Sheeran.

The family was flown out to Munich to meet the Suffolk-raised superstar in 2022.

Caitlin's father Nick Passey, 39, said "Caitlin's jaw was on the floor when he walked out."

"We got to spend about 15 minutes with him and he was the most amazing, down-to-earth guy," he said.

Around £90,000 has been raised by Caitlin's family and others in the community

The family said they wanted Caitlin to have a "safe haven" of great memories for her to draw on.

"We asked all the children to give us 10 things they desperately wanted to achieve or do in your life because we didn't want to single out Caitlin," her father said.

Speaking about her condition, Mr Passey said Caitlin would eventually forget how to swallow and walk, become "wheelchair-bound, then bed-bound and then unfortunately pass away".

Caitlin, who is already suffering from vision loss and speech issues, is expected to begin having epileptic seizures by the age of 10.

"We've been told to be prepared for her to not live past 20," he father said.

Caitlin Passey was a mascot for Tottenham Hotspur when she met Harry Kane

Mr Passey has described the family home as a "building site".

He said they needed £200,000 to renovate their property and secure specialist equipment for Caitlin, such as lifts and a bigger bed.

He said the local community had come together to donate materials, help with construction work and organise fund raising events.

The family continue to fundraise themselves, with Mr Passey and his wife Naomi planning to take part in this year's Challenge London, a city centre triathlon, on 6 August.

Items remaining on Caitlin's list include going on a cruise, visiting Lapland and travelling to Majorca, where her parents met.