ladbible homepage
ladbible homepage
  • iconNews
  • videos
  • entertainment
  • Home
  • News
    • UK
    • US
    • World
    • Ireland
    • Australia
    • Science
    • Crime
    • Weather
  • Entertainment
    • Celebrity
    • TV
    • Film
    • Music
    • Gaming
    • Netflix
    • Disney
  • Sport
  • Technology
  • Travel
  • Lifestyle
  • Money
  • Originals
    • FFS PRODUCTIONS
    • Say Maaate to a Mate
    • Daily Ladness
    • UOKM8?
    • FreeToBe
    • Citizen Reef
  • Advertise
  • Terms
  • Privacy & Cookies
  • License Our Content
  • About Us & Contact
  • Jobs
  • Latest
  • Archive
  • Topics A-Z
  • Authors
Facebook
Instagram
X
Threads
Snapchat
TikTok
YouTube
Submit Your Content Here
  • SPORTbible
  • Tyla
  • GAMINGbible
  • LADbible Group
  • UNILAD
  • FOODbible
  • UNILAD Tech
Girl, 9, with terminal disease rushing to complete her bucket list before losing her memory

Home> News> UK News

Published 21:18 19 Jul 2023 GMT+1

Girl, 9, with terminal disease rushing to complete her bucket list before losing her memory

A family is fundraising for their nine-year-old daughter to be able to complete her bucket list after she received a terminal diagnosis.

Poppy Bilderbeck

Poppy Bilderbeck

google discoverFollow us on Google Discover

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.

In October 2021, the Passey family's 'world fell apart' when Caitlin - aged seven at the time - was diagnosed with juvenile Batten Disease.

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.
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.
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.
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.
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).

Featured Image Credit: GoFundMe

Topics: UK News, Health

Poppy Bilderbeck
Poppy Bilderbeck

Poppy Bilderbeck is a Senior Journalist at LADbible Group. She graduated from The University of Manchester in 2021 with a First in English Literature and Drama, where alongside her studies she was Editor-in-Chief of The Tab Manchester. Poppy is most comfortable when chatting about all things mental health, is proving a drama degree is far from useless by watching and reviewing as many TV shows and films as possible and is such a crisp fanatic the office has been forced to release them in batches.

Recommended reads

US army 'going hungry' after horrifying images of food emergesentdefender/XCharity cuts ties with Sharon Osbourne as she backs Tommy Robinson rallySteve Granitz/FilmMagicTrump-endorser Caitlyn Jenner can no longer travel internationally because of Trump's passport policy(Photo by Mike Marsland/Mike Marsland/Getty Images for Sky)Bride reveals ongoing trauma after sister-in-law throws black paint over her in brutal act of revenge(Cover Images)

Choose your content:

16 hours ago
  • (Photo by Mike Marsland/Mike Marsland/Getty Images for Sky)
    16 hours ago

    Trump-endorser Caitlyn Jenner can no longer travel internationally because of Trump's passport policy

    The US President passed an executive order mandating that passports can only list a person's birth gender

    News
  • (Cover Images)
    16 hours ago

    Bride reveals ongoing trauma after sister-in-law throws black paint over her in brutal act of revenge

    Gemma Monk's mental health suffered after the horrifying attack

    News
  • (Koin Archives)
    16 hours ago

    Proof emerges that solves mystery of family who disappeared more than 60 years ago

    There has been a DNA breakthrough in the case of the missing Martin family, who were last seen in 1958

    News
  • Arturo Holmes/Getty Images for Coachella
    16 hours ago

    Horrific message displayed above Coachella Festival as singer d4vd arrested for murder

    The origin of the message and its meaning are unknown so it may be a coincidence

    News
  • British mother starves herself to death so children didn’t have to watch her die of ‘worst possible disease’
  • Girl, 9, dies after mum left her in the car whilst she went to work
  • Woman, 65, recorded final video and left heartbreaking note before ending her life with assisted dying
  • Heartwarming message left by woman who split with husband and slept with 200 men after terminal cancer diagnosis