Heartbroken parents share their four-year-old daughter won’t live more than the age of 12, because she is slowly going close to death because of childhood dementia.
Violet Jones, of Crosby, Merseyside, is one of around 40 children in England who is diagnosed with this rare Batten disease, which causes dementia symptoms.
When her parents, Michelle and Peter Jones, noticed she was wobbly on her feet and has difficulties in speaking properly, they consulted a doctor. She was diagnosed in January.
She had been suffering seizures for months, a symptom of the neurological disease. But doctors told her parents to not get worried and there was nothing wrong before misdiagnosing epilepsy.
Explaining the Batten disease blighting Violet’s life as ‘the worst form of torture,’ Mr. and Mrs. Jones were told sufferers of the incurable illness don’t live to their teenage years.
Speaking of the day Violet was diagnosed, Mrs. Jones, 35, said: ‘I’d spent hours looking on the internet, so I’d heard of Batten and knew straight away how bad it was.
‘There was no hiding from it. We knew the worst-case scenario, which was confirmed when doctors told us it was unlikely she would live past 12.
‘It’s not even a quick death, it’s slow. It’s the worst form of torture, dying slowly. It’s so hard to even contemplate it. Our world just came crashing down.
‘It doesn’t feel real. This is the kind of thing that happens to other people. It’s heartbreaking.’
Mrs. Jones said: ‘She was with her dad, asleep in his van when she vomited and started to have a seizure. He thought she might have been choking. We took her to the hospital and were told she was fine.
‘But then a week later, she had another seizure. It was the same. She was asleep, then vomited and her eyes started to roll to the side. It was horrendous.’
When the family was on a holiday to Turkey in August, they noticed Violet was unsteady on her feet.
Mrs. Jones said: ‘She looked like she was losing her balance, but we thought she was just being a typical toddler and being a bit silly.
‘But when we came back home, we noticed her speech started to change. She could not get her words out and she slurred.
‘Then, in September, the results of the MRI came back showing some abnormalities, but doctors weren’t sure what they related to, so we were referred to a neurologist for further tests.’
At Christmas 2019, Violet picked up a virus.
‘She could not take two steps without falling down,’ Mrs. Jones, a bank worker, said.
‘We took her to A&E and begged them to do something. We knew something wasn’t right, but they said there was nothing they could do to treat her- we needed to make an appointment with the neurologist.’
In January this year, Violet was finally diagnosed with Batten disease.
Mrs. Jones said: ‘It’s such a horrendous diagnosis. It’s childhood dementia and it takes everything from them.
‘She’s a gorgeous little girl and I’m so devastated this has happened to us. I keep thinking, “Why us? How can this happen to a child?”
Mrs. Jones said: ‘Violet is not the same child she was when we were on holiday in August last year. She’s still happy, but she’s not running around and playing with other kids now. She just stands on the side watching.
‘She’s already forgetting things, like how to hold a pen and how to climb the stairs, or climb on to the toilet, and she falls over a lot. She will be watching television and will fall backward.
‘She hasn’t lost any of her vocabularies yet, but she struggles to get the words out.
‘Eventually, she won’t be able to swallow, see or hear, and she will have to use a wheelchair. She’s already struggling with her walking and loses her balance.’
Mrs. Jones said: ‘She [Violet] was one of the quickest children in the country to be accepted on to the treatment program. We were lucky, as I know some parents had to wait a long time.
‘She has to have surgery to have a shunt fitted, so the medication can go straight to her brain. Then she’ll return to GOSH every other week for the foreseeable future to have the treatment.
‘There’s no cure for Batten, but this is a breakthrough treatment that will slow the onset and extend life expectancy.
Violet’s illness is also devastating for her sister, Millie, 13.
Mrs. Jones said: ‘Millie has such a lovely relationship with her. She will help Violet by asking her to identify colors or with the flashcards.’
Mrs. Jones said: ‘I’m a private person and we’ve kept this to ourselves for months, but I’m speaking out now because it’s not just about my daughter being affected, there are other children, too.
‘I want to raise awareness of the symptoms so that other parents know what to look out for and can get an early diagnosis.’
Violet’s auntie Ashleigh Curran has created a GoFundMe page, which has raised more than £15,000 to help the family cover costs, as they go to London for her treatment every other week.
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