Family fight to spread word for Cambridgeshire girl, 10, with terminal illness
Caitlin Passey was diagnosed with juvenile Batten disease in 2021
The father of a 10-year-old girl from Cambridgeshire believes rare illnesses like hers must get more attention.
Caitlin Passey of Over was diagnosed with CLN3 juvenile Batten disease, a neurogenerative disorder which affects the likes of her eyesight, speech and nervous system, in 2021.
Since then, a fundraiser spearheaded by Caitlin's dad Nick has raised around £120,000 to help provide a 'safe haven' for his daughter.
"We've been quite successful; there's a few thousand people in this area that know what it is that didn't know before, but we've barely touched the tip of the iceberg on how far we want to push this," Nick said.
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According to the Batten Disease Family Association, around 30 to 40 children and young people are diagnosed with the juvenile form in the UK each year.
Caitlin currently deals with speech issues, but is expected to continue having epileptic seizures.
The campaign so far has allowed Caitlin's family to raise money for adaptations to their home, such as converting their old living room into a physiotherapy room.
Fundraising has also enabled Caitlin to make memories, such as meeting Ed Sheeran as well as England footballers Harry Kane and Jude Bellingham.
"At first I didn't know who Ed Sheeran was - when I met him, my mum said 'that's Ed Sheeran, darling' and now he's my favourite singer," Caitlin said.
Support "made us feel we weren't alone"
Caitlin - who plays football using a ball that has bells inside it - has also met Tottenham Hotspur Women striker Beth England.
For the fundraiser, Nick and Caitlin's brother Joseph decided to run four miles every four hours for 48 hours around nearby Willingham and the family have received plenty of support from villagers.
"When we were planning on moving and never felt settled, you were so worried and then when everybody rallied around us, it made us feel we weren't walking the journey alone," Naomi, Caitlin's mum, said.
"Especially during the first couple of years when you're adjusting, it's heartbreaking because you have plans for how things are going to be, and then it doesn't quite work like that.
"We weren't sure whether we would tell everybody about this condition because we were devastated, but once we did, the village outpoured in support and everybody lifted us."
More work to spread awareness
Despite the money raised and the support received for Caitlin, Nick is determined to continue raising awareness of the disease.
"Not everyone's affected by Batten disease and you don't hear about it as much, and there are so many rare diseases out there that don't get the spotlight they need," he added.
"We will keep fighting and not just for Caitlin, but the whole Batten disease community; everyone we know and become close friends with, they need us to fight for them as much as we fight for Caitlin."