A fan of Disney, Tottenham Hotspur FC, and her new puppy, Simba, Caitlin Passey seems like any other nine-year-old.
But tragically, the little girl has a terminal condition which, amongst other terrifying symptoms, causes childhood dementia.
Caitlin was diagnosed with Juvenile Batten Disease in October 2021, and her family are now in a race against time to help her complete her bucket list.
So far, she’s been to Disney World, met popstar Ed Sheeran and met the Lionesses.
‘We know we are going to lose our little girl,’ Dad, Nick wrote on the family’s online fundraising page. ‘But we want to make sure she has the most amazing life she can before then.’
Caitlin’s parents, Nick and Naomi, noticed something was wrong with their daughter in lockdown, when she started bumping into things around the house.
After multiple tests, in October 2021 they found out she had the extremely rare Batten disease – the name for a group of inherited nervous system disorders that usually begins in childhood.
The family were told that Caitlin would develop childhood dementia and, by the time she is 15, will need to use a wheelchair.
Writing of the moment they were told the news, Caitlin’s Dad, Nick said: ‘This couldn’t be right, she was a perfect seven year old, other than asthma and eczema, she was right on track, funny, athletic, strong minded.
‘Several emotional phone calls later confirmed that unfortunately this was really happening to our little girl. She was going to die, but not before stripping her of everything and making her suffer in a way we wouldn’t wish on anyone.’
It is expected that Caitlin will begin to have epileptic seizures by the age of 10 and will eventually forget how to swallow and walk, becoming ‘wheelchair-bound, then bed-bound and then unfortunately pass away’.
He added: ‘We’ve been told to be prepared for her to not live past 20.’
Speaking about how the condition currently effects Caitlin, Nick said: ‘Essentially, her 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.’
Since the devastating diagnosis, the family have been working their way through a bucket list created by the youngster.
The list started when Caitlin visited Disney World, Orlando, in April 2023 with her parents, and siblings, Oliver, Joseph and Sophie.
Nick says: ‘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.
‘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.’
The family soon set up a GoFundMe page, A Safe Haven for Caitlin, to raise money to help tick off Caitlin’s list.
‘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,’ said Nick.
So far, Caitlin has had some magical moments – she’s been a mascot for Tottenham Hotspur and for the Lionesses when they played against the USA at Wembley in the 2022, and she’s met 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’, Nick 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.’
Another of Caitlin’s highlights has been getting a new puppy (a Cavapoochon), which Nick 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 on the list include going on a cruise like her favourite YouTubers the Ninja Kidz, visiting Lapland and travelling to Majorca, where her parents met.
The family are also hoping that some money can go towards adapting the family’s home for Caitlin, which Nick currently describes as a ‘building site.’
They’ve been quoted £200,000 in order to sort all the required renovations, which includes putting in specialist equipment, lifts and a bigger bed.
So far, around £90,000 has been raised via the fundraising page. The local community have come together to support the family too, through fundraisers such as bingo nights, making and selling bracelets, story competitions and raffling off items. Businesses have also donated materials.
‘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,’ says Nick.
‘My cousin has been growing his beard for about 15 years and he agreed to shave it off for Caitlin – his daughter even cried watching him do it.
‘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, Nick and 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 Nick, while Naomi 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.
To support Caitlin’s bucket list, sponsor Nick and Naomi’s triathlon, or donate to the Safe Haven 4 Caitlin fundraising page.
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