Family fundraising to complete bucket list for daughter with terminal condition

The family’s latest fundraising endeavour is Challenge London on August 6 – a triathlon.

Caitlin Passey has a bucket list of items she hopes to complete (Nick Passey/PA)

The family of a nine-year-old with a terminal condition are fundraising to tick items off a bucket list and create a “safe haven” for her at home.

Caitlin Passey was diagnosed with Juvenile Batten Disease in October 2021 – an inherited disorder which effects the nervous system and means her “brain is forgetting to do stuff”.

Since then, her family have been working their way through a bucket list created by the youngster.

One of the first items ticked off the list was going to Disney World, Orlando Florida in April 2022, which led to its creation.

“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,” Nick Passey, 39, Caitlin’s father, told the PA news agency.

“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.

“We set up a GoFundMe – we wanted to create a safe haven for Caitlin in terms of creating somewhere safe for her to live, but also a safe haven in terms of creating somewhere nice for her in her own mind through creating memories.”

The Sun has played a pivotal role in helping to get items ticked off the list, including Caitlin being a mascot for Tottenham Hotspur and for the Lionesses when they played against the USA at Wembley in the 2022, and meeting Ed Sheeran.

“They flew us out to Munich and we got to spend about 15 minutes with him and he was the most amazing, down-to-earth guy,” Mr Passey, who works in procurement and lives in Cambridge, said.

“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.”

One of Caitlin’s highlights has been getting a new puppy (a Cavapoochon), which Mr Passey said Caitlin is “obsessed with”.

“A breeder gave us the puppy and the poor dog – Simba – gets trodden on every now and then when he’s laying in the way of where she’s walking because she can’t see him, but it does make a massive difference when she’s having a sad day.

“She just gives him some cuddles and he licks her face and she starts laughing again.”

Remaining items include going on a cruise like her favourite YouTubers the Ninja Kidz, visiting Lapland and travelling to Majorca, where her parents met.

Speaking about the effect the condition has on his daughter, Mr Passey said: “Essentially, Caitlin’s brain is forgetting to do stuff.

“That’s the easy way to put it. She has childhood dementia.

“She’s already blind – there’s one little spot in the bottom corner of one eye where if she holds something within an inch, she can see it, and dealing with the vision loss has been quite tough for her.

“With her condition, she can also have quite severe mood swings and we’re now noticing that she’s having speech issues, where she can’t get her words out – she’ll stutter or speak at a million miles an hour.”

Mr Passey said that it is expected that Caitlin will have epileptic seizures by the age of 10 and will eventually forget how to swallow and walk and will become “wheelchair-bound, then bed-bound and then unfortunately pass away”.

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

Mr Passey said the family currently live in what resembles a “building site” and were quoted £200,000 in order to sort all the renovations needed to cater to Caitlin as her condition progresses, which includes putting in specialist equipment, lifts and a bigger bed.

Around £90,000 has been raised via the fundraising page and separate fundraisers organised by those in the community, and some have even donated materials.

“There was a company fairly local to us that donated all the materials for our roof and my cousin’s uncle owns a roofing company and they came and did the roof,” Mr Passey said.

“People in the area have even come over in the evenings to do a couple hours of work like moving bits and pieces around or knocking a wall down, so we’ve lucked out on that aspect.”

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.

“My cousin has been growing his beard for about 15 years and he agreed to shave it off for Caitlin and his daughter even cried watching him do it,” he said.

“That got loads of attention around the village and loads of money was raised because they knew how attached he was to it.”

For the latest fundraiser, Mr Passey and his wife Naomi are to take part in this year’s Challenge London, a city centre triathlon, on August 6.

Training has involved spin classes and cardio intensive activities for Mr Passey, while Mrs Passey has done bootcamps, swimming and running.

Any leftover money from the building work will be given to charity Batten Disease Family Association (BDFA), which has supported the family.

The fundraising page for the triathlon can be viewed here: https://app.collectionpot.com/pot/3124316/?fbclid=IwAR1BwZy9bEAJiEYQMl9EUJtSa5a1hKtdrxByvauv68NnuLGfL2BF82M2VwI

The family’s GoFundMe can be accessed here: https://www.gofundme.com/f/SafeHaven4Caitlin