Renee Staska has three beautiful children – Hudson, eight, Holly, six and, Austin, four. All three of them have childhood dementia and are not expected to see their 20th birthday.
The South Australian single mother shared her story with A Current Affair earlier this week, explaining what this devastating diagnosis means for her children.
No treatment or cure
Austin was the first to be diagnosed with Niemann-Pick disease type C1 – a type of childhood dementia. He was just eight months old when doctors discovered he had an enlarged liver and spleen, one of the symptoms of Neimann-Pick disease.
Renee was handed her son’s diagnosis on a piece of paper and told that the disease is terminal with no treatment or cure. She was also told that there was a 25% chance her older two children could also have it.
“I decided to get them blood tested, so I could stop worrying all the time and they both came back positive as well,” Renee told A Current Affair.
“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.”
Niemann-Pick type C is one of more than 70 genetic conditions that trigger childhood dementia. It is caused when there is a genetic mutation in both parents’ DNA. There are a few signs of Niemann-Pick type C including an enlarged spleen and liver as well as poor muscle tone, coordination difficulties, difficulty with swallowing, and abnormal eye movements.
Tragically, the condition will continue to worsen as the children start to lose memory, body functions and the ability to walk, talk and eat.
I don’t have time on my side so I can’t just sit back and hope that something’s going to change.”
Showing signs already
It’s been three years since all three of her children received the devastating diagnosis and Renee now focuses every minute on building memories with her kids.
Both Hudson and Holly are now showing signs of childhood dementia with Hudson struggling to read and write at school while Holly also has trouble keeping up at school.
“She breaks her own heart because she can’t keep up sometimes and she can’t, you know. She tries so hard to understand why it’s not working for her.”
In Australia, there are an estimated 2,300 children living with dementia, with 75% unlikely to make it to their 18th birthday.
“Most children with Niemann-Pick disease type C1 don’t live to see their 20th birthday,” Renee said.
Drug in development
While there is no cure or treatment for Niemman-Pick disease type C, scientists like Dr. May Aung-Htut are doing everything they can to help the children impacted by childhood dementia.
At Perth’s Murdoch University, Aung-Htut and her team are developing a drug to reduce the level of fat production in children with dementia.
“The problem with these children is they have genetic defects that they cannot get rid of these fat molecules,” Aung-Htut said.“They start to build up and this build-up leads to a toxic environment which causes cell death in the brain.”
The federal government has granted $2.7 million for childhood dementia research – a collaboration between three major Australian universities. However, it could take anywhere from 10 months to 20 years before the drug is approved and available.
For parents like Renee who see the devastating effects of childhood dementia on a daily basis, all they can do is hope and take it one day at a time.
“I have to be strong for them, so that they can be strong,” Renee said.
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