"Because we got sent to Sydney, I still have my son."
Watching your child fight for their life surrounded by an army of doctors who work to diagnose a mysterious disease is a moment no parent wishes for.
It all began in May this year for Hayden Riley, who was believed to have recovered from a sinus infection.
From first expressing to his mother, Emma McGowan that "I've got a pinch in my neck", it was only a matter of days before the 11-year-old was unable to rotate his head.
"We did heat therapy, we tried deep heat and Panadol. It eased up a little bit but not entirely," Ms McGowan said.
While Ms McGowan was at work on May 15, she received a phone call from Hayden's dad, Barry, who explained their son was unwell.
These were the moments leading up to the critical decision that unknowingly saved the NSW Central West boy's life.
"I came home from work about four o'clock in the afternoon and Hayden was sitting on the lounge mumbling, he was totally out of it," Ms McGowan said.
"We pulled up at Mudgee hospital and by the time we got out of the car, the whole lower part of his body had gone. He couldn't walk.
"I had no idea what was going on, all I knew was that his stats were declining."
After a CT scan had revealed a blood clot in Hayden's left internal jugular vein, it was a matter of which hospital to be flown to - Dubbo or Sydney.
"As soon as they said we'll airlift you to Sydney I was like 'right, we're going to Sydney' because they wouldn't have said anything otherwise," Ms McGowan said.
Upon arrival at the Sydney Children's Hospital by helicopter at 1.30am on May 16, Hayden was immediately transported to the intensive care unit where he had an arterial line and four cannulas inserted.
He was also placed on oxygen due to his levels dropping to 11 per cent.
An MRI showed the clot had progressed from his internal jugular vein to the sinus located at the back of his brain.
"How does an 11-year-old boy go from being relatively healthy to this?" Ms McGowan questioned.
The doctor said to me 'if you hadn't got into the hospital when you did, chances are you would have woken up the next morning and he would've been dead'.- Hayden Riley's mother, Emma McGowan said
Hayden, who received a sepsis and pneumonia diagnosis, was "on the works" as doctors continued to make discoveries which included an abscess in his frontal lobe.
Initially, surgeons decided not to operate because of the size of the clot which could have resulted in the veins of Hayden's head collapsing or breaking off and going to his heart.
During their fourth week in hospital, a surgeon met with Hayden and Ms McGowan to discuss a surgery the following afternoon that would remove the abscess in his cerebellum.
"He was in surgery for about three and a half hours," Ms McGowan said.
"Up until that stage he couldn't walk because he had lost function in his legs, he was still on oxygen. He had to learn to walk again and was on a feeding tube because he had dropped 10 kilos."
Hayden was soon diagnosed with Lemierre Syndrome, a severe illness caused by bacteria. It has not been determined whether the condition will dissipate or be a life-long diagnosis.
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Hayden has since returned home to Mudgee and been reunited with his father and little sister Makenzie, who were unable to visit him frequently during his hospital stay.
"It was harder on them because I went through it, I lived it, at least I could be there," Ms McGowan said.
"I had so many people saying to me 'I can't believe you haven't broken down yet'. I didn't want Hayden to see me like that."
As they wait for the blood clot to dissolve back into his bloodstream, Hayden is on a blood thinner twice a day and an oral antibiotic three times a day. He also must visit the hospital on a regular basis for tests and scans.
"He doesn't complain about anything but he's still adjusting. He understands he's in the danger period and has to be extremely careful with everything he does. He's pretty much on couch rest for a while," Ms McGowan said.
With medical expenses ongoing and Ms McGowan unable to return to work with Hayden's care at the forefront, a family-friend Belinda Harris set up an ongoing funding page to help alleviate financial pressure.
At the time of publication, $3905 has been raised.
"I will do anything I can to help them not have to worry about money at a time like this and just concentrate on getting Hayden better," Ms Harris said.
My aim is to raise at least 10 thousand dollars because this isn't just going to go away, it's not a broken arm. There's no cast to be put on it.- Family-friend, Belinda Harris
Ms McGowan's family were taken aback by the support from the Mudgee community, who have rallied in their support.
"We are extremely grateful and absolutely blown away. I'm actually gobsmacked because some of these people who are donating I don't even really know. It's very, very much appreciated," Ms McGowan said.
"I'm not going to lie, being in that situation at the hospital is pretty dark and you do feel isolated. To have the support, I think that has really helped us through."
Both Ms McGowan and Ms Harris expressed their admiration for Hayden who has put on a brave smile at every opportunity possible during the past month.
"He has absolutely blown me away, he's been so strong and just rolled with it the whole time," Ms McGowan said.
"It's such a terrible situation for a lovely 11-year-old boy. What he's endured you wouldn't wish on your worst enemy," Ms Harris said.
"He's gone through it all with the biggest smile he can manage. He's just been the strongest."
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