Girl, 9, with dementia races to complete her bucket list before losing her memory as parents pledge to give her the ‘most amazing life’
- Caitlin Passey has met Ed Sheeran and England captain Harry Kane so far
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The family of a nine-year-old girl with dementia are in a race against time to tick everything off her bucket list before she loses her memory.
Caitlin Passey, from Cambridgeshire, was diagnosed with Juvenile Batten Disease in October 2021.
The rare neurological disorder – which there is no treatment for – affects the nervous system and causes children to lose their ability to see, speak and remember things.
Shortly after they received the devastating diagnosis in lockdown, Nick and Naomi Passey whisked Caitlin and her four children away to Disney World in Florida.
Nick, 39, explained: ‘While we were there, we asked all the children to give us 10 things they desperately wanted to achieve or do in your life because we didn’t want to single out Caitlin.
Caitlin Passey, nine, and her father Nick, 39, on a recent family holiday. The youngster was diagnosed with Juvenile Batten Disease in October 2021
‘We just made a note of all of the stuff and over the next 10 days, we just kept revisiting it to see if there was anything else we can add on.’
This led to the family writing a bucket list of things Caitlin wanted to do and places she could visit before she begins losing her memory.
When they returned home, the family created a GoFundMe page and started sharing Caitlin’s story to help her tick things off her list.
Writing on her fundraising page, Nick said: ‘We know we are going to lose our little girl
‘But we want to make sure she has the most amazing life she can before then.’
So far, Caitlin – who has mostly lost her vision – has met her musical hero Ed Sheeran and also been a mascot for her favourite football club Tottenham Hotspur and the Lionesses.
Discussing how Caitlin met Ed, Nick said: ‘We got to spend about 15 minutes with him and he was the most amazing, down-to-earth guy.
‘Caitlin’s jaw was on the floor when he walked out. At first, she could only see his shape and the she recognised his voice and then when he got closer, she could see him.’
What’s more, the family have also adopted a Cavapoochon puppy called Simba – who Caitlin is ‘obsessed with’.
Pictured: Caitlin with Ed Sheeran before his Munich concert. Nick says Ed spent 15 minutes chatting to his daughter
Pictured: Caitlin’s extremely rare neurological condition means she has already lost her sight and will start also experiencing memory loss
The father continued: ‘A breeder gave us the puppy and the poor dog – Simba – gets trodden on every now and then when he’s laying in the way of where she’s walking because she can’t see him, but it does make a massive difference when she’s having a sad day.
‘She just gives him some cuddles and he licks her face and she starts laughing again.’
Caitlin is also hoping to visit Marjorca soon, as it’s where her parents first met.
She would also like to go on a cruise with her favourite YouTubers, the Ninja Kidz, and also see Lapland.
Opening up about his daughter’s daily life with the condition, Nick said: ‘Essentially, Caitlin’s brain is forgetting to do stuff.
‘That’s the easy way to put it. She has childhood dementia. She’s already blind – there’s one little spot in the bottom corner of one eye where if she holds something within an inch, she can see it, and dealing with the vision loss has been quite tough for her.
Caitlin pictured meeting England captain Harry Kane. She has also been a mascot for her favourite football club Tottenham Hotspur and the Lionesses
Caitlin Passey pictured at Ed Sheeran’s Munich concert during the English singer’s recent world tour
WHAT IS BATTEN DISEASE?
Batten disease, also known as Neuronal Ceroid Lipofuscinoses, is a rare genetically-inherited disease.
Sufferers tend to live for 10 years after diagnosis.
It is caused by waste buildup in the cells which creates neurodegenerative effects including:
- Blindness
- Seizures
- Personality changes
- Dementia
- Loss of motor skills and the ability to walk, talk and communicate
Because it is a rare disease, it is often difficult to diagnose and is untested at birth.
Ways to diagnose:
- Blood or urine tests
- Skin or tissue sampling
- DNA analysis
- Electrical studies of the eyes
There are 14,000 children worldwide that are diagnosed with the disorder.
There is currently no known cure or treatment available for Batten disease
‘With her condition, she can also have quite severe mood swings and we’re now noticing that she’s having speech issues, where she can’t get her words out – she’ll stutter or speak at a million miles an hour.’
Caitlin’s parents have been told that she will likely start having epileptic seizures next year and then eventually forget how to swallow and walk.
He added: ‘We’ve been told to be prepared for her to not live past 20.’
Currently, Nick says the family are living in a ‘building site’ as they have been quoted £200,000 to complete all the renovations needed to cater for Caitlin’s condition in future – which will include specialist equipment, lifts and a bigger bed.
So far, they have raised £90,000 on their fundraising page and through other events organised by members of their local community.
The father continued: ‘There was a company fairly local to us that donated all the materials for our roof and my cousin’s uncle owns a roofing company and they came and did the roof.
Nick Passey pictured with his daughter Caitlin when she was a mascot for the England Lionesses
Nick said: ‘Caitlin’s already blind – there’s one little spot in the bottom corner of one eye where if she holds something within an inch, she can see it, and dealing with the vision loss has been quite tough for her.’
‘People in the area have even come over in the evenings to do a couple hours of work like moving bits and pieces around or knocking a wall down, so we’ve lucked out on that aspect.”
‘The community have come together to support the family through fundraisers, including organising bingo nights, making and selling bracelets, story competitions and parting with things they have had for over a decade.
‘My cousin has been growing his beard for about 15 years and he agreed to shave it off for Caitlin and his daughter even cried watching him do it
‘That got loads of attention around the village and loads of money was raised because they knew how attached he was to it.’
Next month, Nick and Naomi are taking part in the triathlon Challenge London and any leftover fundraising will be donated to Batten Disease Family Association (BDFA).
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