An Australian mum was given the horrific news that all three of her children have a rare form of childhood dementia.
Renee Staska’s three kids - Hudson, 8, Holly, 6, and Austin, 4 - all have the genetic condition Niemann-Pick disease type C1.
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Symptoms tend to develop during early childhood and include problems with memory and balance, delayed development of motor skills, seizures and lung and liver problems, according to the NHS.
There is currently no treatment available, and the progressive condition usually results in fatal neurological problems. The disease is estimated to affect around one in 150,000 children in Western Europe.
Now, Staska is faced with the unthinkable prospect of being introduced to palliative (end of life) care for her youngsters, something she says she ‘wasn’t even aware was a thing for children’.
Staska realised something was wrong when doctors spotted her youngest Austin had an enlarged liver and spleen when he was eight-months-old back in 2020.
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While running tests, medics discovered Austin has Niemann-Pick disease type C1.
Staska said: “I got given it on a piece of paper and told this is what it is, it was terminal, there was no cure or treatment.”
She was also told there was a 25 percent chance her two eldest children had also inherited the genetic condition.
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She decided to arrange blood tests for her own peace of mind, and both children came back positive.
Three years on, Hudson and Holly have already started to experience symptoms of the disease.
Staska said: “Hudson struggles to read and write at school.
“Holly’s challenges are different. She breaks her own heart because she can’t keep up. She tries so hard and can’t understand why it’s not working for her."
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Speaking about what she thinks the coming years have in store for Hudson, Holly and Austin, she said: “They develop appropriately to a certain age, then they start to regress, start to lose memories and body functions, the abilities to walk, the abilities to talk, the abilities to eat, eventually until there’s nothing left.”
She added that most children with Niemann-Pick disease type C don’t live to see their 20th birthday.
In the future, there are hopes other parents won’t have to experience Renee’s heartbreak after the Australian government invested AU $2.7 million (£1.4m) into childhood dementia research. There are more than 70 genetic conditions that cause the illness.
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But for now, every day is a gift for Renee and her kids.
She said: “I’m still their mum. They fuel me to get up and fight another day.”
Simon Fearn