An Aussie mum has opened up about her immense heartbreak after learning all three of her children won’t live past their teens.
Hudson, eight, Holly, six, and four-year-old Austin have been diagnosed with childhood dementia. The shocking revelation was made after Austin began suffering health problems as an infant, their mum, Renee Staska, told A Current Affair.
At just eight-months-old, the South Australian single mum’s youngest child was diagnosed with Niemann-Pick disease type C after doctors noticed he had an enlarged liver and spleen.
The disease is one of more than 70 “rare neurodegenerative genetic disorders” that can cause childhood dementia, according to the Childhood Dementia Initiative.
Given that Niemann-Pick disease — which affects the body’s ability to metabolise fat in cells — is inherited, Ms Staska feared all three of her children could be at risk.
“I decided to get them blood tested, so I could stop worrying all the time and they both came back positive as well,” she told the Channel 9 program. “I cried and I cried and very soon we were introduced to palliative care, which I wasn't even aware was a thing for children.”
'Nothing left to lose'
Kids with childhood dementia suffer from confusion, memory loss and loss of speech, with Hudson’s symptoms already evident.
The eight-year-old struggles with reading and writing, while Holly “can’t keep up sometimes” and “tries so hard to understand why it’s not working for her”, the mum said, adding her children will “develop to a certain age” before they “start to regress and lose memories and body functions” until “there’s nothing left to lose”.
“Most children with Niemann pick type C don’t live to see their 20th birthday,” she said.
Most childhood dementia sufferers die before 18
With time not on her side, Ms Staska is speaking out to raise awareness about the horrible disease that affects about 2,300 Aussie kids – 75 per cent of which will die before they turn 18, according to the Childhood Dementia Initiative.
“Due to little funding, research into treating or even slowing childhood dementia has been very limited. Most children die before turning 18,” the organisation's website reads. “With awareness and more research, we can and will improve survival and quality of life for children with dementia.”
Last year, the federal government pledged $2.7 million in funding for research into childhood dementia.
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