At the age of three, Jack Kennelly became unique for a reason you wouldn't wish upon anyone.
It was then that he was diagnosed with a rare and aggressive type of cancer - rhabdomyosarcoma - making him the first child in Australia to be diagnosed with this type of brain cancer.
Jack didn't have any symptoms you would expect before a cancer diagnosis. Mum Kristen Kennelly said it's hard to tell how long he had it before his diagnosis because, at first, the only symptom she saw was a change in behaviour.
Although he was never unwell, the boy who was once a whirlwind of energy and curiosity started to become irritable.
He then started to sleep for long periods during the day - something his parents attributed to an underlying, minor cold that he was trying to fight off. But then one day, he fell asleep while playing at daycare.
"They would call me and say, 'It was a bit strange, we found him asleep on the grass'," Mrs Kennelly said.
"And he wouldn't say anything. There wouldn't be any other issues. It was just that he would fall asleep.
"And then I started to monitor it, and I began to think ... 'We actually hadn't done much today. Why is he now sleeping for two hours?'
"Somebody who was really, really active, who could not sleep, was then needing to sleep when we weren't actually doing many things throughout the day, and then the headache started."
Mrs Kennelly and her husband, Paul, were already doing tests with their local GP concerning Jack's tiredness when they were out to dinner at a friend's house.
Jack and the other children were playing when the three-year-old came up to his parents, hand on his head.
"He said 'It really, really hurts', and he was on the floor," Mrs Kennelly said.
"And I just looked at my husband and said, I think something's wrong. We need to go to the hospital."
The pair dropped their youngest son Finn off with Mr Kennelly's parents before spending the evening at the hospital.
After undergoing several tests, the family was sent home about 2am, with instructions to return if their condition worsened. Jack vomited 24 hours later, and that was enough for the family to return to the hospital.
This time, a CT scan was ordered, the tumour was discovered, and Jack and Mrs Kennelly were flown to Sydney for further investigation and treatment.
"In one sense, I was really thankful that something was happening, that we were on the way to solving what this problem was," Mrs Kennelly said.
"We knew that there was a tumour, but we had very limited information. Nobody had come to talk to us until just as the paramedics arrived to transport us to the airport.
"A doctor who had some experience in brain tumours had come and spoken to us as we were sort of leaving, but I didn't know what to think. I just looked at what's in front of me, and that is Jack. And what does he need at this moment?
"It's quite overwhelming. You're flown into Sydney, you then get to the emergency, and then you're met by 11,000 different people, and there's chopping and changing as to what happens next, because they need to know how bad it is."
It was a few weeks later, after doctors had released the pressure caused by fluid on Jack's brain, that they were able to determine it was rhabdomyosarcoma through a biopsy.
This particular tumour had been a first for Jack's doctors. It's the type of tumour that appears in muscle, and doesn't usually develop in the brain.
Through the Zero Childhood Cancer Program, Jack's cancer was analysed and found to be caused by a genetic mutation known as a DICER1 variant. This definitive diagnosis allowed his doctors to determine a suitable treatment strategy.
The variant means he's prone to tumours as the cells that are normally in the body that generally fight off those growths "are turned off".
Jack also has a benign tumour on his heart, which the family has known about since he was a baby, but has been left as is.
It was just before Christmas, and the family was allowed to travel back to Canberra to celebrate. By the time they returned two weeks later, the tumour had doubled in size.
Jack went on to have nine surgeries, six rounds of chemotherapy, and six weeks of radiation, which he did without an anesthetic, saving him from 28 additional procedures.
"The really unique thing about Jack is that he doesn't complain, and he never has, and he presents really well," Mrs Kennelly said.
"I remember I had a really intense discussion, because ... at night, you're just dealing with the on-call doctor at the hospital. And I was just insisting that something was wrong, that his shunt was blocked, and he needs to get it checked out. And they're like, 'No, he's fine.'
"In the end, my nurse - and this is where your nurses are your best friends - they stepped in and said, 'Well, actually, doctor, I think there is something wrong.
"And they scanned him and said, 'Yes, I am sorry. Something's wrong, we need to go to the theatre. But on the way to the theatre at 1am in the morning, Jack is sitting up in the bed, smiling, laughing, talking and telling the nurse a million jokes, and this is where it's difficult, because that's what he looks like."
The turning point came when doctors decided on one final surgery to remove the remaining tumour. But Ms and Mr Kennelly were called to return to the hospital early.
"The doctor had called and said, 'There's nothing there. We're not proceeding. We've just done the MRI. He's fine. And it was disbelief to us," Ms Kennelly said.
"The oncologist said ... 'It's gone. It must have been post-radiation swelling. We didn't expect it to last that long, but that's obviously what we'd seen on the initial MRI, when we thought there was still some there, it was just the swelling, and that's completely gone now."
Jack is now six and still slowly returning to his normal, cheeky self. He is still dealing with vision issues, and radiotherapy affected his growth hormone levels. The DICER1 variant also means he will need to be regularly checked for tumours.
But Jack is still here. And his family now repays the charities that helped them through fundraising, as well as others that focus on children's cancer.
The most recent of which is Sydney's newest charity fundraiser, Step Out For Cancer on November 9, set to raise $800,000 for the Minderoo Children's Comprehensive Cancer Centre - the first of its kind childhood cancer centre in the Southern Hemisphere.
To donate, to register or for more information, go to stepoutforcancer.com.au.