The father of a 10-year-old girl diagnosed with a terminal condition is organising a gruelling 48-hour challenge to raise money to help adapt their house for her needs.
Nick Passey and his wife Naomi, from Over, were devastated to discover three years ago that their daughter was suffering from a rare degenerative disorder that has already left her almost blind.
Now he is taking on sponsored challenges to help make her life more comfortable – including two marathons this month – and he is about to embark on the most difficult event yet.
Nick says: “When Caitlin received her diagnosis at age seven, the doctor told us the most important thing was for us to start making memories with her – which is what I have made it my mission to do ever since.
“We took trips we would never have taken as a family because we knew that down the road Caitlin could suffer blindness, early dementia and need to use a wheelchair. We also realised we needed to adapt our house so that Caitlyn will be able to continue
living here.
“People have been really generous with their time and money to help with this. And now we are planning to attempt the incredibly difficult 4X4X48.”
The event, known as the Dave Goggins Challenge, requires participants to run four miles every four hours for 48 hours, while cramming in some brief naps and meal times in between.
It will take place over two days from June 21. The runners are hoping to raise at least £200 each in a bid to reach a total of £10,000. The Runpreneur (Kevin Brittain) and Neil Marsh Health & Fitness are two organisations that have taken lead on arranging the 4x4x48 Challenge.
“I’m just starting training and I’m really grateful that 48 people so far have agreed to take part” says Nick.
“We will all as a group, starting at 10am, be doing our runs every four hours. It’s a test of endurance and sleep deprivation.”
The family learned of Caitlin’s condition in 2021 after an eye test revealed an abnormality called cone-rod dystrophy, which indicated she needed genetic testing to find out
the cause.
Nick said: “Caitlin is 10 years old now. But when she was seven, she got diagnosed with a really rare terminal neurodegenerative disease called Batten disease. It means her brain will forget to do stuff but it started off with losing vision and she’s now fully blind apart from light perception.
“She’s now started the next phase of having epileptic seizures.
“And she is already suffering from early onset childhood dementia. And then, as she gets older, she may lose the ability to walk and end up needing a wheelchair.”
The threat of Caitlin having dementia meant the family has concentrated on adapting their home with a wet room and lift as well as making memories together, along with her brothers Oliver, 11, Joseph, 7, and sister Sophie, 4.
“We’ve been trying to tick off as many items off a bucket list as possible,” says Nick.
“As time goes on, she will start to lose more of her short-term memory. But we’ve been told by the nurses that she will remember forever the stuff that is happening now in
her childhood.
“So, we’re trying to create a safe haven of memories for her.
“Knowing that tomorrow isn’t promised has completely changed our outlook on life.
“Now if something is safe for Caitlin and we can afford it, we say yes to it. Instead of saying, maybe we will do it tomorrow or later.”
To support the fundraiser for Caitlin, visit . visit https://shorturl.at/kruvV
