Girl, 9, with ‘childhood dementia’ races to tick off bucket list as she’s diagnosed with rare neurological condition

19 July 2023, 16:15 | Updated: 19 July 2023, 16:18

Caitlin's condition will lead to onset childhood dementia, seizures, loss of motor and language skills.
Caitlin's condition will lead to onset childhood dementia, seizures, loss of motor and language skills. Picture: PA

By Jenny Medlicott

The family of a nine-year-old girl have been sent into a “memory-making frenzy” as they rush to create long-term memories for their daughter before dementia takes hold.

Caitlin Passey, from Cambridgeshire, was diagnosed with Juvenile Batten disease in October 2021.

The fatal condition means Caitlin will suffer onset childhood dementia, seizures, loss of motor and language skills.

Catilin’s condition was first brought to the attention of her parents, Nick and Naomi Passey, after she started experiencing issues with her vision.

After a trip to the opticians, she was referred to an eye specialist, where she was later informed that she had a progressive Cone Rod Dystrophy (which results in vision loss).

Her parents were also told the condition could be hereditary, and so their other three children, aged nine, five and two, would also need to be tested.

But the results brought about far more painful news, as the test revealed Caitlin had a condition known as Battens Disease.

The disease is progressive, meaning her symptoms will worsen and eventually result in death as there is no known cure.

Due to the disease’s trigger of onset childhood dementia, her family fell into a “memory-making frenzy” as they realised her long-term memory would be untouched by the dementia for the longest period of time – so the sooner memories are made, the better chance she has of remembering them.

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Caitlin was diagnosed in October 2021.
Caitlin was diagnosed in October 2021. Picture: PA

After Caitlin was diagnosed, her family jetted off to Florida on a trip to Disney World.

“While we were there, 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,” Caitlin’s dad Nick, 39, said.

“We just made a note of all of the stuff and over the next 10 days, we just kept revisiting it to see if there was anything else we can add on.”

They then compiled a bucket list for her and set up a GoFundMe page as they started their mission to make as many memories for Caitlin as possible and fund the specialist equipment they will eventually need in their home to support her.

Since, Caitlin has visited Harry Potter studios and theme parks, has met the England women’s football team, been Harry Kane’s mascot, flown to Germany to meet Ed Sheeran and more.

Caitlin met her musical hero Ed Sheeran.
Caitlin met her musical hero Ed Sheeran. Picture: PA

Writing on their page, her family said: “Whilst most parents will be planning for a future where they need to help their child with university fees, house deposits, driving licenses and wedding costs, we will be doing none of this. Instead, the devastating reality is we will be looking at covering the costs of specialist mobility equipment and a funeral.”

In a recent update her family also revealed that Caitlin’s eyesight is now almost completely gone and that “she is struggling to come to terms with, as I’m sure we all would!”

Describing Caitlin’s meet and greet with her musical hero, Ed Sheeran, Nick said: “We got to spend about 15 minutes with him and he was the most amazing, down-to-earth guy.

“Caitlin's jaw was on the floor when he walked out. At first, she could only see his shape and the she recognised his voice and then when he got closer, she could see him.”

Caitlin has been a mascot for Harry Kane and the Lionesses.
Caitlin has been a mascot for Harry Kane and the Lionesses. Picture: PA

But Caitlin is still hoping to strike more items off her bucket list, as she wants to go on a cruise with her favourite YouTubers, the Nina Kidz and visit Majorca, where her parents met.

“Essentially, Caitlin's brain is forgetting to do stuff,” Nick said as he explained her condition.

She is now legally blind, suffers speech issues, and is likely to begin experiencing epileptic seizures within the next year, as well as forget how to swallow and walk.

“We've been told to be prepared for her to not live past 20,” he added.

While their home has already undergone a number of renovations to prepare for Caitlin’s care, there’s still plenty more work that needs to be done.

The family have been quoted £200,000 in total, for specialist equipment and renovations, and they have made almost half of this so far at £90,000.

“The community have come together to support the family through fundraisers, including organising bingo nights, making and selling bracelets, story competitions and parting with things they have had for over a decade.”

Writing on their fundraiser, her family added: “We could not have got this far without the incredible help of friends, family and amazing businesses that have offered us help and support along the way.”