IN THE days before Vinnie Fuller was flown to John Hunter Children's Hospital, the active, adventurous three-year-old had salt in his hair and sand in his toes.
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The South West Rocks preschooler didn't have so much as a sniffle or a cough as he played on the beach.
He was "completely healthy" but for a raised temperature.
But on February 28, while at daycare, Vinnie had a prolonged seizure that would change "everything".
"His seizure wouldn't stop. They called the ambulance. I was at work, so I met them at the hospital," his mother, Nicole Fuller, said.
The family was flown by helicopter from Kempsey to the John Hunter Children's Hospital, where he was eventually diagnosed with acute leukoencephalopathy with "restricted diffusion" - a condition so rare doctors believe it is the first time it has been seen in Australia.
Vinnie's medical team believe it was "extremely likely" to have been triggered by a viral infection, although they could not find any evidence of a virus in his system.
"He hadn't been sick at all - he didn't have any symptoms of a cold, but he did have a bit of a temperature two days beforehand, on and off," Mrs Fuller said.
"We didn't think anything of it. He seemed fine."
Once in Newcastle, Vinnie was still showing signs of seizure activity, so he was put into a coma.
"They tried to wake him up from it about four or five times, and he wouldn't wake up," Mrs Fuller said.
"That's when I started to get really worried and scared."
Vinnie's first MRI showed he had swelling to the entire grey matter of his brain.
"The second MRI was where it got a little bit strange," Mrs Fuller said.
"The grey matter swelling had gone away, but now he had white matter swelling. So it had swapped over.
"Initially they thought the swelling was caused by the prolonged seizure, but when they saw the change, they thought the seizure was caused by his swelling, and that's why it didn't stop.
"They've done so many tests, and come to the assumption it must have been post-viral. His body just reacted the wrong way."
Vinnie's third MRI showed the swelling had reduced, but that he had suffered significant brain damage.
Vinnie can no longer walk or run or ride his bike. He uses a wheelchair. But this week, he practiced standing up, and he began eating and drinking without a tube. He is becoming more verbal.
"He'll be in a wheelchair for quite a while, but I'm hoping one day he'll walk again," Mrs Fuller said. "I hope he will regain some more control over his body by the time he goes to school in 2021. He has come quite a long way since he started rehab with the physio. He is shocking everyone."
The family hopes to be home for Vinnie's fourth birthday on September 1.
"But if we're not ready, we're not ready. We want to make the most of all the rehab and resources and therapies he has down here," she said.
The rarity of Vinnie's condition means Mrs Fuller, and her husband, Cade, have many questions, but few answers.
'Wait and see' - words offering some hope, but no guarantees - now taunt them.
He loved riding his bike and swimming - he was a beach boy, an outdoors boy. Hopefully he can get back to that ... we'll just ... wait and see.
- Vinnie's mum, Nicole Fuller, of South West Rocks
"From day one, we have been told - 'Just wait and see what he does when he wakes up'," Mrs Fuller said.
"Then it became, 'Wait and see what he does tomorrow'. Now it's just wait and see what he does differently week to week, month to month. Watch, and wait.
"No one can really tell us anything, because they just don't know. It's hard. He loved riding his bike and swimming - he was a beach boy, an outdoors boy. Hopefully he can get back to that ... we'll just ... wait and see."
Mrs Fuller said Vinnie still has the same sense of humour. He knows the same things. He recognises his family and his friends.
"His brain is working, his thoughts are there, it's just that the messages can't get from the brain to the body to make it do what he wants it to do," she said.
"It must be really frustrating for him. It's heartbreaking. He is kind of trapped in his body."
The family has just begun applying for support through the National Disability Insurance Scheme (NDIS).
"Because he doesn't have a listed disability ... it has been tricky," Mrs Fuller said.
"He'll get support eventually, but it's just a little bit harder because they don't have a box to tick for him.
"It's not something that is on their list."
Vinnie's doctor, paediatric neurologist Dr Rob Smith, said that while they had not been able to find evidence of a virus in Vinnie's system, it was "extremely likely" it was a virus that had "set it off".
"He had a few days where he was a bit unwell, then had some seizures, then suddenly, everything changed for him, and for his family," Dr Smith said.
"What happens with this condition is that very, very quickly, the white matter in the brain changes and becomes inflamed, and the consequence of that is a disturbance of consciousness, and a loss of control of the muscles in the body."
Dr Smith said the "grey matter" is the part of the brain we use to think.
"And it's the part that generates the messages to move, to talk, to do lots of things," he said. "The white matter is the part of the brain that carries those messages to the rest of the body. So when your white matter is damaged, you can presumably still think and understand what's going on, but it's very difficult to get your body to do what you want it to."
Dr Smith, who consulted with his peers from across Australia, said Vinnie's results showed a "very rare" pattern.
"We do see some white matter disorders that are a bit more common than this, but this is a very unusual pattern that we have never seen before," he said. "And as far as I know, at the moment, he's the only child in Australia to have had that.
"There are some that look fairly similar, but his pattern is slightly different. Our responsibility was to make sure there was no unrecognised disease that could be causing this. We looked for those first."
Most of the research and literature on the condition had come from India.
"He was a perfectly healthy child before this started," Dr Smith said. "Now, life has changed, for him, and for everybody in his family.
"He is definitely improving. He is much more interactive than he was. He is much more verbal. It looks to us like he is really trying to communicate. But we just don't know what will happen. We just have to see how he progresses."
The day Mrs Fuller received that panicked call from daycare, she had rushed straight from work to the hospital.
Since then, their life has been relocated to John Hunter Children's Hospital.
"I don't have a life at home any more, at the moment," she said. "I had to leave my job. The day I got that phone call I just had my work clothes and my handbag. I left work - and I didn't go home for five weeks.
"Even then, I just went home for two days to grab a few things to bring back down, but otherwise I have just been here. It was hard to be back in the house. We had our whole life there. And then everything just ... changed.
"Life has flipped."
Mr Fuller, who works as an electrician, had spent the past three months travelling back and forth to South West Rocks to keep paying the bills.
"Cade goes back three days a week so that it's not all gone," Mrs Fuller said.
"Then he is back here from Friday to Monday."
A family member started a Go Fund Me campaign to support them and help pay for mobility equipment, modifications for their home, and a wheelchair-accessible vehicle.
The campaign, called Keep Vinnie Smiling, has raised more than $45,000 so far.
"When we realised he was kind of trapped in his body, I said, 'He's the one suffering, he is the one with the frustrations, he's the one trapped in there. And he can still smile," Mrs Fuller said. "If he can still smile, so can we."
"Just, make the most of your time with your kids, you never know what might happen," Mr Fuller said. "We'd swap places with Vinnie in a second if we could."
