
When you ask Paige Thomas’ mum to describe her little girl, a few words come to mind.
The two-year-old is “strong-willed”, Jess tells me. “Independent, sassy, and boisterous” – the kind of energetic toddler who will tell you exactly what she thinks, at any given time.
A little girl who’d rather be mucking around outside near the horses and her dad’s motorbikes than cooped up in front of a television screen.
And that love of the outdoors is partly what has made the last few weeks so excruciating for Paige’s family – in particular her doting parents, aunties, and grandmother – who are now watching the toddler embark on the fight of her life in Randwick Children’s Hospital in Sydney.
It was August 7 when their worlds were detonated, with a runny nose the only red flag that something could be awry.
“It’s a horrible thing to think that you can have a perfectly normal life three weeks ago, just with a kid with a bit of a runny nose and that was it,” dad Adam explains.
“It’s been really hard to fathom what’s happened. When you go to a hospital and they tell you there’s nothing they can do, that’s really tough. There’s nothing you can do for an ANE patient, you can’t operate on them, you can’t do anything really.”
ANE refers to Acute Necrotising Encephalopathy, a rare disease characterised by brain damage, typically caused by a viral infection. It’s a disease that has seen Paige’s doctors and professional team cry tears of frustration; they know what the problem is, but are rendered powerless to treat it.
While corticosteroids can be used to quell the brain swelling associated with ANE, there isn’t enough knowledge on how to treat the condition. Those who fall ill with it can’t be given many answers, simply because there aren’t any.
Given how quickly Paige fell sick, her parents did absolutely everything they could.
“It was just a normal day,” mum Jess remembers. “I was at home with Paige that day, we went to the kinder gym that morning and she was jumping on the balancing beams, and going through the tunnel, having a great time.”
While Paige was “a little bit off” – sniffles here and there, a bit moody – Jess didn’t think much of it until later in the day, when she went to pick up her nieces from school.
“I noticed Paige’s walking was a bit off, it was a bit slow,” Jess says. After they got something to eat as a group and headed home, Jess opened the car door to find her daughter “shaking all over” in her car seat.