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Woman whose young children have dementia shares red flags which told her something wasn’t right

Home> News> Health

Updated 18:39 15 Dec 2023 GMTPublished 18:30 15 Dec 2023 GMT

Woman whose young children have dementia shares red flags which told her something wasn’t right

The Aussie mum first noticed something was wrong when her son was just three years old

Jess Battison

Jess Battison

A woman whose young children have dementia has shared the red flags which told her something wasn’t right.

Two of Jill O’Grady’s three kids - Rory, 10, and Anna, seven - are both diagnosed with dementia.

And the Aussie mum said the pair began showing signs at a very early age.

However, because of a belief that dementia is only found in the elderly, the youngsters’ conditions went undiagnosed.

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As per the NHS, dementia is a syndrome ‘associated with an ongoing decline of brain functioning’.

Symptoms include having problems with memory loss, understanding, mood and trouble speaking. And like with adults, dementia in children is terminal.

Jill explained that she picked up on Rory’s slow development when he was only three as he struggled to form sentences and pronounce words.

Doctors told her that the little lad would eventually ‘catch up’ but it soon became hard to ignore just how far behind he was.

Rory and Anna.
ABC

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The kids’ dad Brendan told ABC: “What might take a neurotypical kid a week to learn would take Rory months.

“Learning not just numbers, letters, learning things like getting your shirt on the right way round. I don't think he's put his shirt on the right way round ever.”

Jill even claims she was ‘given the advice that I should see a psychologist’ because she was ‘fixated’.

When he was six-years-old, Rory underwent a urine test, determining he had Sanfilippo Syndrome.

This is one of more than 70 conditions widely diagnosed as childhood dementia - something families say is under-researched and underfunded.

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It’s reported that the majority of children with this only live to the age of nine, with 70 percent not making it to their 18th birthday.

Anna has also been diagnosed with Sanfilippo Syndrome, but her symptoms are not as prominent as her brother’s.

They said Rory's never put on his t-shirt correctly.
ABC

Jill said: “I'm quite confident that if I hadn't randomly stumbled upon it on Google we still wouldn't have a diagnosis.

“We try not to think about the future, we live for now, and for now they're here and they're happy so we make sure we get the most out of every day.”

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Childhood dementia initiative explains that the condition ‘results from progressive brain damage and is caused by over 100 rare genetic disorders’.

It also states that while the symptoms are similar to that of adult dementia, ‘each child’s experience with dementia is unique’.

In the list of symptoms, it includes: memory loss, personality changes, loss of vision and hearing, seizures and behavioural issues.

Featured Image Credit: ABC

Topics: Health, Parenting, Australia

Jess Battison
Jess Battison

Jess is a Senior Journalist with a love of all things pop culture. Her main interests include asking everyone in the office what they're having for tea, waiting for a new series of The Traitors and losing her voice at a Beyoncé concert. She graduated with a first in Journalism from City, University of London in 2021.

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@jessbattison_

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