Girl, 9, not letting terminal diagnosis hold her back from making ‘dreams come true’

Caitlin Passey lives with the extremely rare Batten disease (Picture: Facebook/SafeHaven4Caitlin)

A terminally ill young girl has had her dreams come true after meeting heroes such as Harry Kane and Leah Williamson.

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

The youngster uses a special ball with bells attached – nicknamed ‘Jangles’ – so she can take part.

This is because Caitlin has a very limited sight, and needs to make the most of her other senses to dash around the pitch.

Her parents noticed something was wrong during lockdown after she began to bump into things around their home.

After multiple tests, they found out she had the extremely rare Batten disease.

Caitlin was told she would develop childhood dementia and, by the time she is 15, will need to use a wheelchair.

Doctors told her parents that experiences from this period of her life will be the final long term memories she holds onto.

England’s Leah Williamson called Caitlin her ‘mini-me’ when they met (Picture: SafeHaven4Caitlin)

The nine-year-old uses a special football with bells to play football (Picture: SafeHaven4Caitlin)

As a result, her family have spent their savings, changed jobs and travelled the world in order to make the very most of the time she has left.

A highlight for Caitlin has been when she was called ‘mini-me’ during a brief meeting with her very favourite player.

Caitlin told Metro.co.uk: ‘It was amazing to meet the Lionesses after I watched them train, especially my hero Leah Williamson because it was brilliant to see them win for our country.

‘She’s a defender like me and plays really well and is captain of the England team.

‘My dad also told me she has some health issues too so that inspires me even more because she doesn’t let it get in the way.

Caitlin got the chance to be a mascot alongside her hero Harry Kane (Picture/SafeHaven4Caitlin)

Caitlin has found to keep up her football despite her diagnosis (Picture:SafeHaven4Caitlin)

‘I also loved meeting the Spurs team when I was mascot and walking out holding hands with my other hero Harry Kane.

‘I just wish I got to spend more time with them all. It was also really cool meeting Ed Sheeran because it was just him and our family, I want to be friends with them all.’

Caitlin grew up in a sporting family, with her brother and dad keen football fans.

She began to play aged five with her friend Lily but their parents soon realised the need for a dedicated girls team.

Caitlin’s dad Nick started a team in Over so the girls had the opportunity to play, and they’ve since been joined by a long list of Lionesses-in-the-making.

The Passey family recently enjoyed a trip to Germany to hang out with none other than Ed Sheeran (Picture: SafeHaven4Caitlin)

Caitlin ‘faces all of her challenges head on without any fear’ (Picture: SafeHaven4Caitlin)

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

She added: ‘I just try my very hardest. Because my eyes don’t work very well I play with a bell ball which I can hear when it’s moving. Sometimes I get a bit confused with all the noise and the game being so fast which can make me upset, but I just try my best.

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

Friends of the family have pulled out all the stops to support the family since the nine-year-old’s diagnosis.

A pal of Nick’s managed to reach out to Daniel Radliffe, who sent a video message to Caitlin.

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

Across Cambridgeshire and beyond, Caitlin is inspiring others and raising awareness of Batten disease.

In Over, the local parish council are working on ways to make places more accessible, such by as changing the colour of areas in parks to suit those with visual impairments.

Currently, the family is working hard to transform their home to make it comfortable for her to live in as Caitlin’s condition worsens.

Building a lift and creating more space is key.

Their fundraising campaign is called ‘SafeHaven4Caitlin’ and reflets both protecting her body and her mind in the time she has left.

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

Caitlin also met Spurs player Bethany England during her visit to see the Lionesses train last year (Picture: SafeHaven4Caitlin)

She also had a chat with Manchester United’s Ella Toone (Picture: SafeHaven4Caitlin)

Caitlin’s mum and dad, Nick and Naomi, said it is ‘impossible’ to express how proud they are of the youngster.

They told Metro.co.uk: ‘She is quite simply the bravest and most determined little girl we have ever met. She faces all of her challenges head on without any fear and just gets on with life. We are in awe of her.

‘We have been fortunate enough to get some positive moments out of the worst possible situation.

‘These memories will live with us forever which makes these hard times a little bit more bearable.’

Time is running out to transform the family’s home in the time Caitlin has left.

Caitlin’s proud parents are in ‘awe’ of her inspiring achievements (Picture: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 companies, it is very humbling and makes you realise there definitely is good in the world.

‘It’s [the fundraiser] has gone quite well so far, much better than we could have imagined, however it has definitely plateaued and we are still a long way off of our target with time definitely against us.’

For Caitlin, she wants nothing more than to have more time with her idols – and help promote understanding.

She added: ‘I would love to spend more time with Leah Williamson and Harry Kane, however I am 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 people with needs just need a bit more time sometimes.’

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

Caitlin’s Bucket List

Please get in touch 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 Katy Perry live in concert, and meet her

Meet, and spend some time with, Harry Kane and Leah Williamson

Have better eyes and just be ‘normal’

Meet the Ninja Kidz

Visit Italy

Have her own bedroom with double bed, TV and Harry Potter themed decorations

Go on holiday with best friends

Have one of her stories published in a book

Go on a cruise ship holiday like the Ninja Kidz did

Go to Disneyland California like the Ninja Kidz

Go on a skiing holiday

A den 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 nervous system disorders that most often begin in childhood.

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

Batten is the term commonly used to describe the many forms of the disease, which is formally called neuronal ceroid lipofuscinosis.

Symptoms generally include:

Progressive vision loss leading to blindness

Seizures

Movement disorder

Dementia

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

Other symptoms that continue to worsen over time include learning difficulties, poor concentration, and progressive loss of language skills and speech. 

Most children become bedridden and unable to communicate.

The Batten Disease Family Association is a charity working to enable everyone who is affected by the condition to live life to the full and secure the care and support they need until we find a cure.

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

Get in touch with our news team by emailing us at [email protected].

For more stories like this, check our news page.

Caitlin was given around ten years to live and told she would develop childhood dementia.