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Cambridgeshire community to take on running challenge for girl with terminal illness

Participants will run four miles every four hours for a total of 48 hours in support of Caitlin Passey, who has juvenile Batten disease.

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Caitlin Passey putting her thumbs up, holding a cane and looking at the camera

Locals in Cambridgeshire have come together to take on a running challenge which pushes participants to the “absolute brink” to support a 10-year-old with a terminal illness.

Caitlin Passey was diagnosed with juvenile Batten disease in October 2021 – an inherited disorder which affects her nervous system, brain and eyesight, and means she often uses a white cane if she goes outside.

Since then, her family have been trying to adapt their home in Over, Cambridgeshire, to provide a “safe haven” for their daughter, which includes plans to convert their old living room into a physio room and adding a ramp to the entrance.

Caitlin Passey posing with ball under her arm
Caitlin is a keen footballer (Nick Passey/PA)

Around 45 locals, including Caitlin’s father Nick and her brother Joseph, seven, have teamed up to take on a challenge which will see them run four miles every four hours for a total of 48 hours from June 21-23 around the neighbouring village, Willingham, to help the family edge closer to their goal.

Mr Passey, 40, who works in procurement, told the PA news agency: “Initially, there were five of us doing it, but it has grown wings quite dramatically and now it’s gone up to 45 people of various ages, and we’ve got males and females and people of different abilities.

“It’s actually quite overwhelming to the point where I can’t really compute it in my head because we’ve known for a while that in the local community we are very well-supported, but because we do a lot of fundraising events, we’re very aware that it could get to a point where where people may not want to help.

Nick Passey with his thumbs up
Nick Passey is taking on the challenge alongside other runners (Nick Passey/PA)

“So, to see so many people put themselves forward, it’s very heartwarming.”

Kevin Brittain, a friend of Mr Passey’s since their teenage years and an entrepreneur who is on a mission to raise £1 million for children’s charities by run-vlogging 40,075km – the distance of one lap around the world – came up with the idea to take on the four-mile challenge, alongside Mr Passey.

The 42-year-old, who lives in Willingham, Cambridgeshire, and has raised around £33,000 through his pursuit so far, told PA: “I wanted to do something for Caitlin because I’ve known Nick many years and I’ve got three children of my own, so when I found out about Caitlin’s condition, it crushed me.

“I’ve known of the David Goggins’ 4X4X48 ultra endurance challenge and it’s something that takes you to the absolute brink, so we thought if we got a really good group of people together to do this, we could raise a significant amount of money to support Caitlin and help delay the effects of this terrible disease, and give her the facilities and care she needs.”

Kevin Brittain looking at the camera and smiling
Kevin Brittain is taking part in the challenge (Kevin Brittain/PA)

Mr Passey said Caitlin’s condition has continued to deteriorate and she experienced her first seizure roughly two months ago.

“It was like a sledgehammer, it was like diagnosis day all over again,” he said.

“She’s now on medication for that, to manage the epilepsy and then what we’ve noticed is that her friends, without malice involved, are growing at a quicker rate than what Caitlin is.

“They’ve all got WhatsApp groups and can make plans, stuff that Caitlin just cannot do, so that’s quite hard for Caitlin to witness.”

The family also hope to help Caitlin have as many memories as she can by ticking items off a bucket list she has created.

Caitlin Passey poses with footballer Beth England
Caitlin with footballer Beth England (Nick Passey/PA)

Some of the experiences she has managed to complete include being a mascot for Tottenham Ladies in an FA Cup match in March, where she walked out on to the pitch holding hands with Beth England.

“We’ve been to watch Tottenham Ladies a few times since and Beth always spots Caitlin in the crowd, says hello and takes a photo with her, and it makes Caitlin feel special and like she has a close friend who is a footballer,” he added.

Caitlin is a keen footballer herself and plays for Over Sports Youth FC girls under-10s using a bell ball – a football which has bells embedded inside of it – and is currently on the England Para Talent Pathway, a route for players with specific impairments to become part of one of the England Para squads.

Stuart Elsom is one of Caitlin’s coaches and will be taking part in the running challenge.

He told PA he has been impressed with how Caitlin has taken to football, often with the support of players and their families.

Stuart Elsom takes part in a run
Stuart Elsom has praised Caitlin for the bravery she has shown in football sessions (Stuart Elsom/PA)

“Nick usually directs Caitlin where to go and it’s quite remarkable because her sight is almost completely gone, but I can tell you, I have never seen such bravery – she will just run towards that ball regardless of the fact that there’s 13 or so other kids on the pitch,” the 45-year-old who lives in Over, Cambridgeshire, said.

“Her team-mates are fantastic – they always make sure they try to include her, they’ll shout her name and they’ll pass the ball to her as well.”

Although admitting he is “not used” to taking on endurance endeavours, he wanted to help raise money for the Passey family.

“The pain of this event will be nothing compared to the challenge that Caitlin and her family face daily,” he said.

“So, we will get around whether it’s running, walking, jogging or crawling.”

The upcoming challenge is expected to finish on June 23 at roughly 7.30am and Caitlin will be on hand to give out medals and “cheer” on participants.

The Collection Pot for the challenge can be found here:

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