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A family is fundraising for their nine-year-old daughter to be able to complete her bucket list after she received a devastating terminal diagnosis.
Since then, the family has launched a GoFundMe page, putting all its efforts into making sure Caitlin gets to tick off everything on her bucket list before her condition gets progressively worse.
Caitlin first knew she was unwell when she began struggling with her vision.
Her family took her to the opticians and later to see an eye specialist, where they were told the seven-year-old had Cone Rod Dystrophy and would end up losing her sight.
Nine-year-old Caitlin’s family are fundraising to help her complete her bucket list. Credit: Facebook/SaveHaven4Caitlin
Heartbreakingly, after taking a genetic test, the family received an email from a consultant which revealed Caitlin had ‘Juvenile Onst CLN3’ a.k.a. Batten Disease.
Her family write on her GoFundMe page: “A quick Google search and our hearts sank.”
Juvenile NCL (Batten Disease) ‘begins between the ages of five and eight,’ according to the Brain Foundation.
It’s website continues: “The typical early signs are progressive vision loss, seizures, ataxia or clumsiness.
“This form progresses less rapidly and ends in death in the late teens or early 20s, although some may live into their 30s.”
The disease also carries a ‘dementia aspect’ Caitlin’s family explains.
Caitlin has juvenile Batten Disease. Credit: Facebook/SafeHaven4Caitlin
However, the nine-year-old’s ‘long-term memory will be one of the last things to go’ and so the Go Fund Me notes: “Everything we do now will stay with her the longest.
“This sent us into a memory-making frenzie trying desperately to tick off all of our little girl’s life’s wish list.”
So far, Caitlin has managed to take a trip to Harry Potter World as well as Alton Towers, DisneyLand Paris and DisneyWorld Florida.
The nine-year-old was also Harry Kane’s mascot ‘on two occasions’ and has met the Lionesses, as well as being a mascot for them too.
Caitlin’s a massive Harry Potter fan. Credit: Facebook/ SafeHaven4Caitlin
Caitlin has also met Ed Sheeran – ‘her jaw was on the floor’ her dad says – and has been to Centre Parcs with her family too.
As per an update on the GoFundMe, posted 6 July, the family are having their house redone with a physio room installed so the nine-year-old can ‘climb and stay active’ to ‘retain her mobility as long as possible’.
But they’re also renovating it for specialist equipment, lifts and a bigger bed for when Caitlin’s condition progresses.
However, Caitlin’s condition is getting progressively worse and she is ‘forgetting to do stuff’.
Her dad notes she’s ‘already blind’ with only one little spot she’s able to see out of.
Caitlin was able to meet one of her idols, Ed Sheeran. Credit: Facebook/SaveHaven4Caitlin
“Dealing with the vision loss has been quite tough for her […] and we’re now noticing that she’s having speech issues.”
But the nine-year-old’s determination to complete her bucket list continues – you can follow along with Caitlin’s journey on Facebook page ‘SafeHaven4Caitlin’.
Most recently, the nine-year-old went to the zoo with her uncle and auntie and had some hands on time with a capybara.
The GoFundMe page can be donated to here – so far, it’s raised £58,645 of its £200,000 target.
Any money leftover from the building work on the Passey’s house is reported as set to be donated to charity Batten Disease Family Association (BDFA).
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