Pictures: Phillip Castleton
It’s one long “Yes Day” at Renee Staska’s home. If her six-year-old Austin suggests visiting 10 playgrounds in one day, the devoted mum will try to make it happen. And if Hudson, nine, and Holly, eight, want to sleep in the lounge room, Renee will drag the mattresses out. It’s all about making the kids smile and creating a lifetime of memories for Renee to cling on to.
“I’m a big believer in saying yes to things and being present,” the 32-year-old full-time single mum from Adelaide tells Woman’s Day.
“If the kids want to play basketball, I’ll stop doing the dishes and play.”
Renee has a very good reason – her children have all been diagnosed with a devastating type of childhood dementia that has an average life expectancy of 10 years.
“It’s scary as Hudson’s getting towards that age,” Renee says. “It’s with me all the time. If I’m not talking about it, I’m thinking about it. They will one day lose all their bodily functions – eating, talking, walking…We’ll need palliative care.”
Austin was the first to be diagnosed with the genetic condition, called Niemann-Pick Type C (NPC), which causes dementia. In March 2019, when he was eight months old, doctors did genetic testing to find a reason for the enlarged liver he’d had since birth.
“He was doing so well,” recalls Renee. “He was happy, laughing and meeting all his milestones, so I wasn’t worried, then they told me what they had found.
“There’s no treatment or cure and they said not to google it because of the horrific symptoms. I crumbled, but I also didn’t really believe it.”
A month later, doctors explained any future children also had a one-in-four chance of getting NPC.
Renee remembers, “I thought, ‘Hang on, I have two other kids. There’s a chance they have it too?’”
But with Hudson then aged four and Holly then two, she didn’t have any real concerns. They didn’t have any symptoms and she waited another three months before testing them.
“I went into a routine appointment for Austin and the doctor said, ‘There’s no easy way to say this, but both your other kids have it.’
“Immediately, I bawled like a child. I held Austin, and I cried and cried. It seemed so unfathomable. Doctors told me there was nothing they could do, and to go home and make family memories.”
Renee’s mum Jodie, 53, was babysitting Hudson and Holly when Renee had to call her with the devastating news.
“I had this physical pain in my chest I’ve never felt before,” Jodie shares. “It was horrific. Then I had to be Mum again and make dinner. I couldn’t fall into a heap.”
Over the five years, Renee’s had to do the same. To “keep on keeping on”, as she puts it.
“Hudson was doing well at school but now needs his own programme,” says Renee.
“He has short concentration and gets very tired. He has lost all his social connections too, but he’s content.”
It’s harder for Holly. “She’s always been able to write her name and have a go at reading,” Renee admits. “But she can’t get past Year 1 stage and she cares so much. It shatters her heart seeing the gap between her and her friends.
“I haven’t told the kids what they have. They think they’re the fastest and the strongest – they have huge dreams. I don’t want to be the one who takes the wind out of their sails.”
Renee’s in touch with other families with the rare condition.
“I speak with people online and I do anything that helps raise awareness,” she says. “Of course, I hope for a cure, but really, I’d like just anything that will buy me a bit more time.”
Recent South Australian state funding has injected $550,000 into research.
“People don’t know about childhood dementia and that needs to change,” explains Renee, saying 90 children die from it every year in Australia.
There’s at least one case of childhood dementia here in New Zealand too.
For now, while she harbours hope, Renee’s also realistic and is determined to make the most of every moment left with her “babies”.
“I want to take them to the snow and to Australia Zoo,” she says. “They love the footy, so we go there. I take photos and videos, and I spoil them.
“Sometimes the only thing I can do is buy a toy or take them to a sushi train. We spend a lot of time just hugging, having fun and making memories.”
Read up on childhood dementia and donate to find a cure at childhooddementia.org.
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