Cambridgeshire: Girl, 9, doesn’t have Batten’s disease stopping her from dreaming

Caitlin Passery is living with the extremely rare Batten disease (Image: Facebook/SafeHaven4Caitlin)

Caitlin Passey is living with the extremely rare Batten disease (Image: Facebook/SafeHaven4Caitlin)

A terminally ill young girl has made her dreams come true after meeting heroes like Harry Kane and Leah Williamson.

Caitlin Passey, 9, is a keen footballer who plays on a team in her village of Over, Cambridgeshire.

The teen uses a special ball with attached bells – nicknamed “jangles” – so she can join in.

That’s because Caitlin has very limited vision and needs to make the most of her other senses to zip around the field.

Her parents noticed something was wrong during lockdown after she started bumping into things around her house.

After several tests, they found out that she had the extremely rare batten disease

Caitlin was told she would develop childhood dementia and would be confined to a wheelchair by age 15.

Doctors told her parents that the experiences from this period of her life will be the last long-term memories she holds on to.

England's Leah Williamson called Caitlin her'mini me' when they met (Image: SafeHaven4Caitlin)

England’s Leah Williamson called Caitlin her ‘mini me’ when they met (Image: SafeHaven4Caitlin)
The nine-year-old uses a special football with bells to play football (Image: SafeHaven4Caitlin)

As a result, her family has spent their life savings, switched jobs, and traveled the world to make the most of the remaining time.

A high point for Caitlin came when she was called “mini-me” during a brief encounter with her favorite player.

said Caitlin “It was great to meet the Lionesses after watching them train, especially my heroine Leah Williamson as it was great to see them win for our country.

“She’s a defender like me and plays really well and captains the England team.

“My dad also told me that she also has health issues, which inspires me even more because she doesn’t let that stop her.

Caitlin got the chance to be a mascot alongside her hero Harry Kane (Image/SafeHaven4Caitlin)
Caitlin has revealed she’s keeping up her football despite her diagnosis (Image: SafeHaven4Caitlin)

“I also loved meeting the Spurs team when I was a mascot and going out holding hands with my other hero, Harry Kane.

“I just wish I could spend more time with all of them. It was also really cool to meet Ed Sheeran because it was just him and our family, I want to be friends with all of them.

Caitlin grew up in an athletic family, her brother and father were avid football fans.

She began playing with her friend Lily at the age of five, but her parents soon recognized the need for a dedicated girls’ team.

Caitlin’s father, Nick, started a team in Over so the girls could have a chance to play, and they have since been joined by a long list of would-be lionesses.

The Passey family recently enjoyed a trip to Germany to hang out with none other than Ed Sheeran (Image: SafeHaven4Caitlin)
Caitlin ‘faces all of her challenges without fear’ (Image: SafeHaven4Caitlin)

Caitlin says her friends are very understanding and patient when it comes to making sure she can enjoy the workout to the fullest.

She added: “I’m just trying my best. Since my eyes don’t work very well, I play with a bell ball that I can hear when it moves. Sometimes I’m a bit confused with all the noise and fast paced game which can upset me but I’m just trying my best.

“It would be nice if the parents were quieter. I would also love for my teammates to play blindfolded for some time so they can understand it better.

Family friends have pulled out all the stops to support the family since the nine-year-old was diagnosed.

A friend of Nick’s managed to get hold of Daniel Radliffe, who sent Caitlin a video message.

The actor explained what he looked like and what he was wearing to the Harry Potter superfan in his special message.

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Across Cambridgeshire and beyond, Caitlin inspires others and raises awareness of Batten’s disease.

In Over, the local council is working on ways to make places more accessible, for example by changing the color of areas in parks to make them suitable for people with visual impairments.

Currently, the family is working hard to remodel their home to be comfortable to live in as Caitlin’s condition worsens.

Building an elevator and creating more space is key.

Her fundraising campaign is called “SafeHaven4Caitlin” and aims to protect both her body and her mind in the remaining time.

After Covid restrictions eased, Caitlin and her family also enjoyed trips abroad for special holidays and to meet Ed Sheeran. They also hope for many more special experiences.

Singles - Caitlin - WEEKEND: Family creating memories of terminally ill daughter with childhood dementia

Caitlin also met Spurs player Bethany England during her visit to see the Lionesses move last year (Image: SafeHaven4Caitlin)
She also had a chat with Manchester United’s Ella Toone (Image: SafeHaven4Caitlin)

Caitlin’s mum and dad, Nick and Naomi, said it was “impossible” to express how proud they are of the boy.

said “She is quite simply the bravest and most determined little girl we have ever met. She faces all her challenges without fear and just gets on with life. We are in awe of her.

“We were fortunate to get some positive moments out of the worst possible situation.

“Those memories will live with us forever, making these tough times a little bit more bearable.”

Time is running out to remodel the family home while Caitlin stays.

Singles - Caitlin - WEEKEND: Family creating memories of terminally ill daughter with childhood dementia

Caitlin’s proud parents are in awe of her inspirational achievements (Image: SafeHaven4Caitlin)

Nick and Naomi added: “As Caitlin’s parents, we are so incredibly grateful for the kindness and support we have received from countless strangers and businesses, it is very humbling and makes you realize that there is definitely good in the world.

‘It is [the fundraiser] has gone quite well so far, much better than we could have imagined but it has definitely plateaued and we are still a long way from our goal as time is definitely against us.’

For Caitlin, there’s nothing she wants more than to spend more time with her idols — and help foster understanding.

She added: “I’d love to spend more time with Leah Williamson and Harry Kane, but I’m most desperate to meet Daniel Radcliffe because I really love Harry Potter.

“I want to thank everyone for helping me. It makes me feel special and I wish people would take more time to understand that sometimes people with needs need a little more time.”

You can donate to Caitlin’s fundraiser by clicking here or scanning the QR code at the end of this article.

Caitlin’s Bucket List

Please contact us if you can help the Passey family achieve any of these goals, or Contact the SafeHaven4Caitlin Facebook page.

  • Meet the Harry Potter cast, especially Daniel Radcliffe
  • See and meet Katy Perry live in concert
  • Meet Harry Kane and Leah Williamson and spend some time with them
  • Have better eyes and just be “normal”
  • Meet the Ninja Kidz
  • Visit Italy
  • You have your own bedroom with double bed, TV and Harry Potter themed decorations
  • Go on vacation with your best friends
  • Have one of their stories published in a book
  • Take a cruise vacation like the Ninja Kidz
  • Go to Disneyland California like the Ninja Kidz
  • Go on a skiing holiday
  • A cave like the ones they make on Dengineers
  • Visit Lapland

What is Batten disease?

Batten disease — also known as neuronal ceroid lipofuscinosis (NCL) — is the name for a group of inherited disorders of the nervous system that most commonly begin in childhood.

They interfere with a cell’s ability to recycle a cellular debris called lipofuscin.

Batten is the term commonly used to describe the many forms of the disease formally known as neuronal ceroid lipofuscinosis.

Symptoms generally include:

  • Progressive vision loss leading to blindness
  • seizures
  • movement disorder
  • dementia

Developmental skills such as standing, walking, and speaking may not be achieved or may be gradually lost.

Other symptoms that get worse over time include learning difficulties, poor concentration, and progressive loss of speech and language skills.

Most children become bedridden and unable to communicate.

The Batten Disease Family Association is a charity dedicated to enabling all people affected by the condition to live their lives to the fullest and secure the care and support they need until we find a cure have found.

You can read more about Caitlin’s story on the charity’s website by clicking here

Scan this QR code with your phone to donate to Caitlin's fundraiser

Scan this QR code with your phone to donate to Caitlin’s fundraiser

Get in touch with our messaging team by emailing us at

For more stories like this, Visit our news page. Cambridgeshire: Girl, 9, doesn't have Batten's disease stopping her from dreaming

Justin Scaccy

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