Cambridgeshire: 9-year-old girl, Batten’s disease doesn’t stop her from dreaming

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

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

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

The young woman uses a special ball with bells, nicknamed ‘Jangles’, in order to participate.

This is because Caitlin has very limited eyesight and needs to make the most of her other senses to run across the field.

Her parents noticed something was wrong during the lockdown after she started bumping into things at home.

After multiple tests, they discovered that it had the extremely rare Ribbon disease.

Caitlin was told that she would develop childhood dementia and that when she turned 15, she would have to use a wheelchair.

The doctors told her parents that the experiences of this period of her life will be the last long-term memories she will have.

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

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

As a result, his family spent their savings, changed jobs and traveled the world to make the most of the time he has left.

A highlight for Caitlin has been being called a ‘mini-me’ during a brief meeting with her favorite player.

Caitlin told him ‘It was amazing to meet the Lionesses after watching them train, especially my hero Leah Williamson because it was great to see them win for our country.

She’s a defender like me, she plays very well and she’s the captain of the England team.

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

Caitlin got the chance to be a mascot alongside her hero Harry Kane (Image/SafeHaven4Caitlin)
Caitlin has managed to maintain her level of soccer despite her diagnosis (Image: SafeHaven4Caitlin)

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

‘I wish I could spend more time with all of them. It was also great meeting Ed Sheeran because it was just him and our family, I want to be friends with all of them.”

Caitlin grew up in a sporty family, with her brother and father being enthusiastic soccer fans.

She started playing at the age of five with her friend Lily, but her parents soon realized the need for a dedicated women’s team.

Caitlin’s father, Nick, started a team in Over so the girls would have a chance to play, and they have since been joined by a long line of budding Lionesses.

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

Caitlin says that her friends are very understanding and patient when it comes to making sure she gets the most out of her training.

She added: ‘I just do 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 get a little confused with all the noise and the game so fast that it can bother me, but I do my best.

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

Family friends have done everything possible to support the family since the nine-year-old’s diagnosis.

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

The actor explained what the Harry Potter super-fan looked like and what he wore in his special message.

To view this video, please enable JavaScript and consider upgrading to a web browser that supports HTML5 video

In Cambridgeshire and beyond, Caitlin is inspiring others and raising awareness for Batten disease.

In Over, the local parish council is working on ways to make places more accessible, such as changing the color of park areas to accommodate the visually impaired.

The family is currently working hard to transform their home so that she can live comfortably as Caitlin’s condition worsens.

Building an elevator and creating more space is key.

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

After Covid restrictions eased, Caitlin and her family also enjoyed trips abroad for special vacations and to meet Ed Sheeran. They look forward to many more special experiences as well.

Singles - Caitlin- WEEKEND: Family making memories for their terminally ill daughter with childhood dementia

Caitlin also met Spurs player Bethany England during her visit to watch the Lionesses train last year (Image: SafeHaven4Caitlin)
He also chatted with Manchester United’s Ella Toone (Image: SafeHaven4Caitlin)

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

They said ‘She is simply the bravest and most determined girl we have ever met. She faces all the challenges in front of her without any fear and just goes on with her life. We are in awe of her.

We have been lucky to get some positive moments out of the worst possible situation.

“These memories will live with us forever, making these difficult times a little easier.”

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

Singles - Caitlin- WEEKEND: Family making memories for their terminally ill daughter with childhood dementia

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

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

‘Is [the fundraiser] It has been going pretty well so far, much better than we could have imagined, however it has definitely plateaued and we are still a long way from our target with time definitely against us.

For Caitlin, all she wants is to spend 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 more 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 people in need just need a little more time sometimes.”

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

Caitlin’s Wish 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 cast of Harry Potter, especially Daniel Radcliffe
  • Watch Katy Perry live in concert, and get to know 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 your own bedroom with a double bed, TV and Harry Potter themed decorations.
  • Going on vacation with best friends
  • Publish one of your stories in a book.
  • Go on a cruise vacation like the Ninja Kidz did
  • Go to Disneyland California like the Ninja Kidz
  • go on vacation in the snow
  • A den like the ones they make in 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 often begin in childhood.

They interfere with a cell’s ability to recycle a cellular waste 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 loss of vision leading to blindness.
  • seizures
  • movement disorder
  • Dementia

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

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

Most children become bedridden and unable to communicate.

The Batten Disease Families Association is a charity that works to enable everyone affected by the condition to live life to the fullest and get 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

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

Get in touch with our news team by sending us an email at

For more stories like this, see our news page.

Leave a Comment