A mother-of-three is doing her best to spend every moment she can with her three children after the siblings were all diagnosed with childhood dementia.
Renee Staska, from South Australia, and her family’s life was turned upside down when her youngest son had an enlarged liver and spleen at eight months old.
“They found Niemann-Pick disease type C1, which is a type of childhood dementia. 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,” Renee told A Current Affair.
The illness is caused when there is a genetic mutation in both parents’ DNA, and it meant there was a 25 per cent chance Renee’s older two children could also have it.
She decided to get blood tests for Hudson, now eight, and Holly, six, to discover if they also had it.
The tests came back positive, and more than three years on from that moment her older children are starting to show signs.
Hudson struggles to read and write at school, while her daughter “breaks her own heart” as she is left confused on why she can’t keep up with those around her.
Renee said she cried for a long time and the family was introduced to palliative care.
The devastating diagnosis means that the three children would develop to a certain age before they would start to regress and lose memory and function.
An enlarged liver and spleen is one of the most well-known physical symptoms, but co-ordination difficulties, poor muscle tone, difficulty with swallowing and abnormal eye movements are also indicators, according to the Boston Children’s Hospital.
“Most children with Niemann-Pick disease type C1 don’t live to see their 20th birthday,” Renee said.
In Australia, there is an estimated 2300 children living with dementia, with 75 per cent unlikely to make it to their 18th birthday.
Renee said while it is difficult, she knows every day she has to get up and be strong for her three children as she is still their mother.
Meg Maack from the Childhood Dementia Initiative said currently families have to fight for support for their children.
Recently, the federal government put aside $2.7 million for three universities to research childhood dementia.
Dr May Aung-Htut, from Perth’s Murdoch University, and her team are working on a drug to reduce the level of fat production in kids with dementia.
She said kids with the illness can’t get rid of these fat molecules, leading them to build up to a toxic level which causes brain cells to die.
But, it could take anywhere between 10 months or 20 years before it could be made widely available.