The UK-based family of a nine-year-old girl suffering from dementia have revealed how their “hearts broke in two” when she was diagnosed with Juvenile Batten Disease.
Caitlin Passey’s parents, Nick and Naomi, first noticed something was wrong with their daughter during lockdown. She was then sadly diagnosed with Batten Disease. It causes dementia and, as a result, Nick and Naomi have said they’re in a race against time to tick everything off Caitlin’s bucket list before she loses her memory.
She’s already met Ed Sheeran, adopted a puppy and been a mascot at a football match, but her parents want to make memories now as Caitlin’s long-term memory will be one of the last things to fade, they have been told.
The little girl wants to visit Lapland and Majorca and go on a cruise with her favourite YouTube stars.
UK-based girl, aged nine, living with dementia
Writing on their GoFundMe page, the parents admitted they’d never heard of Batten Disease before Caitlin’s diagnosis.
“Rapid vision loss was the first symptom, the onset of childhood dementia, followed by seizures, loss of motor and language skills and then death,” they said. They added that they thought “this couldn’t be right”. They also commented that Caitlin was “naturally gifted at sports, a joker and a normal strong minded little girl”.
She was going to die, but not before stripping her of everything and making her suffer in a way we wouldn’t wish on anyone.
However, they added: “Several emotional phone calls later confirmed that unfortunately this was really happening to our little girl. She was going to die, but not before stripping her of everything and making her suffer in a way we wouldn’t wish on anyone. Our hearts broke in two!”
The parents were then told there was no cure. Instead, all they can do is manage the symptoms and “make memories”.
They added: “Due to the dementia aspect of the disease, Caitlin’s long-term memory will be one of the last things to go, so anything and everything we do now will stay with her the longest. This sent us into a memory-making frenzie trying desperately to tick off all of our little girl’s life’s wish list.”
Sadly, then then added: “Whilst most parents will be planning for a future where they need to help their child with university fees, house deposits, driving licenses and wedding costs, we will be doing none of this. Instead, the devastating reality is we will be looking at covering the costs of specialist mobility equipment and a funeral.”
Fundraising to tick off her bucket list
After receiving the devastating diagnosis, Nick and Naomi whisked their young family away to Disney World in Florida. While they were there, they came up with the idea of a bucket list for Caitlin.
Returning home, they created a fundraising page to enable Caitlin to tick things off her list. They’re now also raising money to create a peaceful space at their family home that Caitlin can relax in.
Writing on their GoFundMe page, her parents said: “As part of her condition her brain cannot process too much information or noise. As a result she becomes overwhelmed and acts out. Reasoning with her is impossible. We just have to ride it out.
“Having a space Caitlin can call her own would mean that she has somewhere to retreat to when she is struggling. This should also give relief to everyone as it means she can emerge when she is feeling better and bonds with her brothers and sister can hopefully again flourish.”
They added sadly: “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.”
The family continue to fundraise themselves, with Nick and Naomi planning to take part in this year’s Challenge London, a city centre triathlon, on August 6.
You can donate to her GoFundMe page here.
What is Batten Disease?
Also known as Neuronal Ceroid Lipofuscinoses, Batten Disease is a rare genetically-inherited disease. Sufferers tend to live for 10 years after diagnosis.
It is caused by waste build-up in the cells. This creates neurodegenerative effects including blindness, seizures, personality changes and dementia. It also causes the loss of motor skills and the ability to walk, talk and communicate.
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