Jess thought her two-year-old just had a runny nose. Then she opened the car door.

acute necrotising encephalopathy of childhood

 

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.

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“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.

“As soon as I got out of the car I thought ‘something’s not right here’.”

Jess took Paige to the local hospital near their home in Moree, a town in northern New South Wales, where the condition worsened. Within moments, her daughter was drifting in and out of sleep, had developed an intense fever, was vomiting, and having seizures.

The proceeding 64 hours was a flurry of fear and pain that saw Paige flown to Tamworth hospital, then later to the intensive care unit at Randwick Children’s Hospital.

While doctors understandably believed Paige was suffering from meningitis – a far more common infection that targets the brain and spinal cord membranes – an MRI showing significant brain damage served as a dagger to the family’s heart.

ANE in childhood
"Within moments, her daughter was drifting in and out of sleep, had developed an intense fever, was vomiting, and having seizures." Image: Supplied.

“It was the worst thing you can possibly hear,” Adam says. “I just couldn’t talk, to be honest. The first thing we asked was ‘how do we fix it?’ and they told us you can’t really fix it.

“To see thirty people standing around your little girl who’s just two years old is pretty tough. It was pretty brutal, excruciating, to watch.”

Doctors came to the Thomas family on three separate occasions and told them that Paige’s passing was imminent. Each and every time she, somehow, pulled through.

Paige was even admitted to Bear Cottage - the state’s only children’s hospice for kids in palliative care - before showing marked (and unexpected) signs of improvement and being returned to Randwick, where she is now.

Despite being told their daughter would be fed through a tube for the rest of her life, just 24 days later Adam and Jess are already seeing her swallow peach, apple, custard.

In every sense of the word, Paige Thomas is a fighter.

“I’m super proud of her, she’s a tough kid. The toughest kid of them all, to be honest,” Adam tells me.

“I’ve always said, Paige will decide what she wants to do. We’re very proud parents that she’s fighting hard. We’re focused on doing the best we can for Paige, to give her the best quality of life that she can have.”

While they have stable jobs as a beauty therapist and Harley Davidson dealership manager respectively, Jess and Adam are living hundreds of kilometres from home, between Randwick Lodge, Bear Cottage and, most recently, Ronald McDonald House.

As they dedicate every possible moment to their baby girl - Jess and Adam rotate nights between who watches Paige in hospital, and who has a night of sleep - the bills and future medical costs continue to stack up.

“I’ve spoken to another family with a child with ANE and they said it’s more than $100,000 a year,” Adam says. When they know more about Paige’s condition - and what her rehabilitation will entail - they will be looking to renovate their house to best meet her needs.

For that reason Paige’s aunties, Tahni and Sarah, have set up a GoFundMe for Paige, hoping any donations can make these next few months just that little bit easier.

Until they have more clarity on what Paige’s life will look like, the Thomas family is surrounding themselves with positivity.

“We’ve got dealt this card and I’m torn apart,” Paige’s dad says.

“I can’t tell you how much I miss the little girl that she was, but I will not let her down. We will not let her down.”

If you would like to help the Thomas family in this difficult time, please donate on their GoFundMe page.

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