The family of a 10-year-old with a terminal condition are on an urgent mission to raise money to complete her adapted bedroom and a bucket list she has created.
Caitlin Passey was diagnosed with Juvenile Batten Disease in October 2021 – an inherited disorder which affects her nervous system, eyesight and means her “brain is forgetting to do stuff”.
Since then, her family have been trying to balance adapting their home in Cambridge with making their way through an “ever-increasing” bucket list created in April 2022 by the youngster, as her condition continues to deteriorate.
Nick Passey, 40, Caitlin’s father, told the PA news agency: “Caitlin now has only one tiny spot in the corner of one eye which lets her just about tell if something is light or dark, so navigating around the house at the moment – which is a building site – is a nightmare.
“There’s boxes of materials and tools just laying around, so she’ll trip over stuff, she’ll bang into things, she’ll stub on her toe on bits of wood, but she doesn’t moan.
“She’s almost had to go through a grieving process and has become quite depressed about it.”
As well as the deterioration in her eyesight, she goes through mood swings regularly and “the childhood dementia side of the condition is kicking in”.
Building work on the family’s home began in January 2023, with the majority completed, except for Caitlin’s room.
Despite work in her room beginning in June, months later, it is still unusable as more than £15,000 is needed to ensure she has all she needs, which includes £6,250 for the installation of a wetroom and £4,500 for air conditioning units since Caitlin is sensitive to heat.
“She basically sleeps in mine and my wife’s bed every night,” Mr Passey, who works in procurement, said.
“Her bedroom should have been finished before Christmas, but we were let down by one plumber and then we kept having loads of tradesmen cancel last minute or refuse to finish half-done work by other tradesmen.”
Many have pitched in to help – with one of the family’s friends painting a Harry Potter mural in Caitlin’s room for the wizard superfan, and another friend donating a double bed for the youngster.
South Cambs District Council also gave the family a grant of £30,000 in 2023, which was used to build a lift so Caitlin can get around the house more easily.
However, as the family are still a long way off their target, ticking off items from Caitlin’s bucket list has come to a standstill, with priority items including meeting Daniel Radcliffe and going to Disneyland Paris to stay in the Marvel Hotel.
Items already achieved include meeting Ed Sheeran in September 2022 and being a mascot for Tottenham Hotspur and for the Lionesses when they played against the USA at Wembley in the 2022, with the help of The Sun.
Mr Passey said: “We had to make the conscious decision to really work on the house, which has been devastating.
“We went to Disneyland Paris in April 2022 and we would always walk past the Marvel Hotel and she kept saying she wishes she could stay there.
“She has a lot of places she wants to travel to on the list like Lapland which I get, because we don’t know how long she can travel for.”
One of the most “heartbreaking” wishes is to “have better eyes and just be ‘normal’”.
“When I heard that, I just had to look away quickly and compose myself, while my wife took herself away from the situation, had a cry, washed her face and came back and reset,” Mr Passey said.
He added while watching Harry Potter And The Philosopher’s Stone with Caitlin one day, which features a scene when Hermione fixes Harry’s glasses with a spell called ‘Oculus Reparo’, Caitlin asked her father: “Could we use this spell to fix my eyes?”
Despite Caitlin’s adversities, she has tried to remain as “strong” as possible, by finding solace through taking part in monthly football sessions with the FA Para Talent Hub.
“We’re trying to get her to use her body and brain as much as she can to stave off progression of the condition in the hope that one day she might be able to get on to a trial with the FA Para Performance Pathway,” Mr Passey added.
More information about Caitlin’s situation can be found on Facebook: https://www.facebook.com/profile.php?id=100083028024040
The family’s fundraising page can be viewed here: https://www.gofundme.com/f/adapted-bedroom
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