Our brave daughter will probably be blind, in a wheelchair & have dementia by 15 – but kind Sun readers can help
OBSESSED with Harry Potter, YouTube videos and playing football with her siblings, Caitlin Passey seems much like any other eight-year-old.
But the adorable schoolgirl was diagnosed last October with the rare and deadly condition Batten disease, which will leave her fighting for her life.
Doctors have warned that by the time she turns 15 she will probably be blind, a wheelchair user and suffering from childhood dementia.
But the brave youngster wants to enjoy life now as much as possible.
And today we are asking YOU, our army of kind-hearted Sun on Sunday readers, to help her.
Caitlin’s parents Nick and Naomi want to raise £200,000 to help adapt their house in Over, Cambs, so they can care for her and to pay for a “memory list” of adventures for her.
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Mum-of-four Naomi, 32, said: “Her eyesight is deteriorating fast, it has halved since January, so we are running out of time.
“We consider ourselves lucky, if that is the right word, as we spotted her condition early.
“Now we have around 18 months to make memories.
“A lot of kids with Batten disease don’t get diagnosed until they start having seizures, and their quality of life deteriorates rapidly.
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“Caitlin has started complaining of leg pains, which is a sign they are about to come. It is a ticking timebomb.
“Over Easter we sat all our children down and asked, ‘If you could do anything at all, what would it be? Tell us ten things.
“Caitlin said, ‘What I want most is better eyes — and to be normal’.
“That was heartbreaking. It is the one thing we would do anything to give her but can’t, so we are trying everything else we can.
“She is a mad Harry Potter fan and wants to see the play. She dreams of going to Center Parcs, on a cruise and to have her own hot tub.
“She dreams of meeting Katy Perry and Ed Sheeran and wants to go to a Tottenham Hotspur match to be a mascot.
“We will try to raise as much money as we can to transform her home and make as many of her dreams come true as possible.”
Caitlin is one of an estimated 25 to 40 children in England with the disease.
It affects the nervous system, causing seizures, sight and mobility loss and early death. She is unlikely to live past 20.
Caitlin appeared healthy until late 2019. She was bright and playful at school and loved playing in the park and cycling with her siblings Oliver, nine, Joseph, five, and three-year-old Sophie.
But while she has always kept up academically, it was during lockdown that issues really became apparent.
Nick, 38, said: “She kept acting up and eventually we realised it was because she was struggling to see the work she was set.
“We later found out she got by at school by copying the person next to her.
“We took her to Specsavers for an eye test and the optician picked up on this little flatline on her retina.
“He said, ‘You need to get that looked at’. In July last year Caitlin was diagnosed with cone-rod dystrophy, which meant she was going blind.
“They referred us to a geneticist. When we were then told it was Batten disease, we were distraught.”
Fighting tears, Naomi added: “You look at her and think she’s so strong and awesome. How will we deal with life where she’s not here?
“The chances are she’s had issues with her vision from a very early age and we didn’t pick up on it.
“We are told that what you and I can see from 20 metres away, she cannot see until one metre away.
'BRIGHT AND PLAYFUL'
“But you would not believe that she’s registered blind because she’s so brave and doesn’t like admitting she has a problem.
“The closest we got to it was when she told us she’d never seen a rainbow. It broke our hearts.”
Caitlin has a chemical imbalance in her brain that causes mood swings and her behaviour is regressing, another classic symptom of Batten disease.
Her dad said: “Oliver and her friends are maturing as every month passes but she is going the other way. She now plays better with the younger children.
“She still plays in the girls’ football team and she is a huge fan of these YouTubers called the Ninja Kidz. They made her an honorary member.
“But girls at school have started doing TikTok videos and she’s not interested. She is happier playing with dolls.
“She knows she’s got a thing called Batten but if you mention the word disease she flips and says, ‘I’m not diseased’.
“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 clocked her writing on a blackboard we have at home, ‘Why can’t I be normal?’
“She has a lot of anger at times. She will hurl abuse at us but then five minutes later is in tears apologising and saying she loves us.
“We’ve had to explain she has this thing affecting her eyes and mood. We haven’t explained the seizures yet.”
Batten disease is an inherited condition but neither Nick nor Naomi knew they were carriers until Caitlin was diagnosed.
The fact they both had the mutated gene meant their kids had a one in four chance of developing the condition — but none of Caitlin’s siblings have, although all carry the gene.
Nick used to run a landscape gardening firm, while Naomi was a cardiac physiologist, but both quit to care for Caitlin.
They have used all their savings to take the family to Mexico and Disneyland this year.
Naomi said: “We used every penny but Caitlin loved the holidays.”
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Their campaign Safe Haven 4 Caitlin is raising money to make their house wheelchair-accessible, install a lift and build an adapted bedroom where Caitlin can play and exercise safely so she will not one day need to go into a care home.
Their GoFundMe site has so far raised £35,911 toward its £200,000 target.
BIG SEARCH FOR A CURE
by Lee Price
BATTEN disease is an incurable group of 13 fatal genetic disorders that affect the body’s ability to get rid of cellular waste lipids and proteins.
These then build up, 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 is hereditary.
A baby born to parents who both carry the abnormal gene has a 25 per cent chance of developing the condition and a 50 per cent chance of being a carrier.
But it is rare. The Batten Disease Family Association (BDFA) estimates that between 100 and 150 people in the UK have the condition, and around 14,000 globally.
The ForeBatten foundation estimates that 1.2 of 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 problems with eyesight.
Amanda Mortensen, chief executive of the BDFA, says: “A diagnosis of Batten disease is life-changing and we have an astonishing community of families in the UK who have one or more children with this condition.
“We recognise that the whole family is impacted and needs support through this extraordinary journey.
"Batten disease is often misdiagnosed, or it can take several years to get a diagnosis, and there is a postcode lottery of care with no clear clinical pathway.
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“There is only one treatment – which is not a cure – for one type of Batten disease.
“But we are hopeful for more treatments in the future and there is a lot of research under way.”
HERE'S HOW TO HELP
CAITLIN’S family want to raise £200,000 towards adapting their house so they can continue to care for her.
You can help them raise funds by going to .
Alternatively, maybe you own a building company which could help with supplying key materials or would like to help her fulfil her bucket list.
Email [email protected] with Caitlin in the email subject and include any support you might be able to offer.
