Our daughter could be blind and have dementia at 15 – how Sun readers can help

OBSESSED with Harry Potter, YouTube videos and playing football with her siblings, Caitlin Passey looks a lot like any other eight-year-old.

But the adorable schoolgirl was diagnosed last October with the rare and deadly Batten disease, which will leave her fighting for her life.

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Caitlin Passey, 8, was diagnosed last October with the rare and deadly Batten disease, which will leave her fighting for her life1 credit
Caitlin's parents, Nick and Naomi, want to raise £200,000 to help adapt their home in Over, Cambs, so they can look after her and pay for a 'souvenir list' of adventures for her.

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Caitlin’s parents, Nick and Naomi, want to raise £200,000 to help adapt their home in Over, Cambs, so they can look after her and pay for a ‘souvenir list’ of adventures for her.1 credit

Doctors have warned that by the age of 15 she is likely to be blind, in a wheelchair and suffering from childhood dementia.

But the brave youngster now wants to enjoy life as much as possible.

And today we ask you, our army of good-hearted Sunday Sun readers, to help her.

Caitlin’s parents, Nick and Naomi, want to raise £200,000 to help adapt their home in Over, Cambs, so they can look after her and pay for a ‘souvenir list’ of adventures for her.

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Naomi, 32, mum-of-four, said: ‘His eyesight is deteriorating rapidly, it has halved since January so we are running out of time.

“We consider ourselves lucky, if that’s the right word, because we spotted his condition early.

“Now we have about 18 months to create memories.

“Many children with Batten disease aren’t diagnosed until they start having seizures, and their quality of life deteriorates rapidly.

“Caitlin has started complaining of leg pain which is a sign that it’s about to come. It’s a ticking time bomb.

“At Easter, we sat all our kids down and asked them, ‘If you could do anything, what would it be? Tell us ten things.

“Caitlin said, ‘What I want most is better eyes – and being normal’.

“It was heartbreaking. It’s the one thing we would do anything to give him but can’t, so we’re trying everything we can.

“She’s a crazy Harry Potter fan and wants to see the play. She dreams of going to Center Parcs, going on a cruise and having her own hot tub.

“She dreams of meeting Katy Perry and Ed Sheeran and wants to go to a Tottenham Hotspur game to be a mascot.

“We will try to raise as much money as possible to transform his house and fulfill as many of his dreams as possible.”

Caitlin is one of around 25 to 40 children with the condition in England.

It affects the nervous system, causing seizures, loss of sight and mobility, and premature death. She is unlikely to live past 20.

Caitlin appeared healthy until the end of 2019. She was bright and playful at school and loved playing in the park and cycling with her siblings Oliver, nine, Joseph, five, and Sophie, three years.

But although she still kept up with her studies, it was during the lockdown that the problems really became apparent.

Nick, 38, said: ‘She kept acting and we finally realized it was because she was having trouble seeing the work she had done.

“We found out later that she got by at school by copying the person next to her.

“We took her to Specsavers for an eye exam and the optician detected this little flat line on her retina.

“He said, ‘You need to look into this.’ In July last year, Caitlin was diagnosed with conical dystrophy, which meant she was going blind.

“They referred us to a geneticist. When we were then told it was Batten’s disease, we were devastated.

Fighting back tears, Naomi added: “You look at her and think she’s so strong and awesome. How are we going to deal with life where she’s not there?

“There’s a good chance she had vision problems from an early age and we didn’t notice.

“We are told that what you and I can see from 20 meters away, she cannot see until one meter away.

“BRIGHT AND PLAYFUL”

“But you wouldn’t believe she’s registered as blind because she’s so brave and doesn’t like to admit she has a problem.

“The moment we came closest to was when she told us she had never seen a rainbow. It broke our hearts.

Caitlin has a chemical imbalance in her brain that causes her mood swings and her behavior to regress, another classic symptom of Batten disease.

Her father said: “Oliver and his friends are maturing over the months, but she is going the other way. She now plays better with the younger ones.

“She still plays on the girls’ soccer team and she’s a huge fan of these YouTubers called the Ninja Kidz. They made her an honorary member.

“But the girls at school have started making TikTok videos and she’s not interested. She’s happier playing with dolls.

“She knows she has something called Batten but if you mention the word sickness she turns around and says, ‘I’m not sick’.

“When we got the diagnosis, we didn’t tell her until she started asking questions like, ‘Why can’t my eyes be normal?’

“We even timed her writing on a blackboard we have at home, ‘Why can’t I be normal?

“She sometimes has a lot of anger. She will insult us, but five minutes later she is in tears, apologizing and saying she loves us.

“We had to explain to her that she has this thing that affects her eyes and her mood. We have not yet explained the seizures.

Batten’s disease is an inherited condition, but neither Nick nor Naomi knew they were carriers until Caitlin was diagnosed.

The fact that they both had the mutated gene meant that their children had a one in four chance of developing the disease – but none of Caitlin’s siblings have it, despite all carrying the gene.

Nick ran a landscape gardening business, while Naomi was a cardiac physiologist, but both quit to take care of Caitlin.

They used all of their savings to take the family to Mexico and Disneyland this year.

Naomi said, “We used every penny, but Caitlin loved the vacation.”

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Their Safe Haven 4 Caitlin campaign is raising money to make their home wheelchair accessible, install an elevator, and build an adapted bedroom where Caitlin can play and exercise safely so she won’t ever need to go to a retirement home.

Their GoFundMe site has so far raised £35,911 towards its £200,000 goal.

GREAT SEARCH FOR A CURE

by Lee Price

BATTEN’S disease is an incurable group of 13 fatal genetic diseases that affect the body’s ability to rid itself of lipids and proteins from cellular waste.

These then accumulate, causing problems with vision, thinking and movement, as well as seizures, dementia and, eventually, premature death.

Also known as neuronal ceroid lipofuscinosis (NCL), Batten disease runs in families.

A baby born to parents carrying the abnormal gene has a 25% chance of developing the disease and a 50% chance of being a carrier.

But it’s rare. The Batten Disease Family Association (BDFA) estimates that between 100 and 150 people in the UK have the disease, and around 14,000 worldwide.

The ForeBatten Foundation estimates that 1.2 in every 100,000 babies born will have Batten disease.

There are 13 types and the most common are late infantile (CLN2) and juvenile (CLN3). Caitlin has CLN3 and the first sign of this is often vision problems.

Amanda Mortensen, Chief Executive of the BDFA, says: “A diagnosis of Batten’s disease is life changing and we have an amazing community of families in the UK who have a child or children with the disease.

“We recognize that the whole family is affected and needs support throughout this extraordinary journey.

“Batten’s disease is often misdiagnosed, or it can take years to get diagnosed, and there is a care lottery by postcode with no clear clinical pathway.

“There is only one treatment – ​​which is not a cure – for one type of Batten disease.

“But we hope for more treatments in the future and there is a lot of research going on.”

HERE’S HOW TO HELP

CAITLIN’s family want to raise £200,000 to adapt their home so they can continue to care for her.

You can help them raise funds by going to gofundme.com/f/SafeHaven4Caitlin.

Alternatively, maybe you own a construction company that could help you with essential materials or you would like to help them fill out their to-do list.

Email sundayfeatures@the-sun.co.uk with Caitlin in the subject line and include any assistance you may be able to offer.

Caitlin once said:

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Caitlin once said: ‘What I want most is better eyes – and being normal’Credit: collect
Nick ran a landscape gardening business, while Naomi was a cardiac physiologist, but both quit to take care of Caitlin.

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Nick ran a landscape gardening business, while Naomi was a cardiac physiologist, but both quit to take care of Caitlin.1 credit
Caitlin is one of approximately 25-40 children in England with Batten disease

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Caitlin is one of approximately 25-40 children in England with Batten diseaseCredit: collect



Our daughter could be blind and have dementia at 15 – how Sun readers can help

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