Jacob Blackwell was "the sickest person" in John Hunter Hospital for a fortnight last year.
Doctors feared the now 21-year-old wouldn't survive, after he was rushed to hospital suffering from meningococcal disease.
Jacob, who contracted the disease in August last year, is part of the Know Meningococcal awareness campaign.
His mum Chelsea Blackwell knew something was wrong when she noticed her son wasn't on Instagram.
"I used to jump up every morning and check to make sure that he got up in time for work. You'd see the time on Instagram," Chelsea said.
"I'd be like, 'he's up, he's gone to work'."
Jacob would always text her at night "love ya mum" or "goodnight", but she hadn't received a message.
"I found my beautiful boy on the floor, on his back," she said.
"I tried to open the door and couldn't. I had to really push because his leg was up against it."
Meningococcal disease is rare.
Hunter New England recorded only one case this year, five last year and six in 2022.
A high of 39 cases occurred in the Hunter district in 2002.
One in 10 patients who contract "invasive meningococcal disease" may die, usually within 24 to 48 hours from the first symptoms.
Up to one in five survivors may develop long-term disabilities.
After his mum found Jacob, an ambulance came "really fast".
"They were there within a couple of minutes. Then they told me to go wait in another room while they worked on him," Chelsea said.
"Then all I remember was the ambulance took off and I ran after it because I didn't get a chance to say goodbye to him.
"He had a police escort to hospital, where they were stopping all the traffic lights to let him through because he was so unstable."
Doctors told her "it was highly likely that he wouldn't survive the night".
"They said for two weeks, he was the sickest person in John Hunter Hospital."
Doctors told her they needed to do brain surgery, as Jacob had "an infection in his brain called meningitis".
"And if they didn't do this surgery, he would most definitely die."
They also said it was highly likely "he would pass away through the surgery because he was so unstable".
Jacob, who spent 22 days in intensive care, is slowly improving after a long rehabilitation period.
"I'm just trying to get to the next day, then the day after that. I'm not really looking too far ahead," he said.
Chelsea said he was "lasting longer throughout the day without needing sleep".
"He's able to jump on a bus and go to the shopping centre and buy a coffee. I'd like him to have independence."
Meningitis Centre Australia CEO Karen Quick said "general awareness of meningococcal disease is not enough".
"We do rely on doctors to provide health-related information, but parents also have a responsibility to be proactive," Ms Quick said.
"I would urge parents to know the signs and symptoms and understand ways to help minimise risk."
Symptoms may include sudden onset of fever, headache, neck stiffness, joint pain, rash of red-purple spots or bruises, aversion to bright light, nausea and vomiting.
Young children may have symptoms including irritability, difficulty waking, bulging fontanelle, high-pitched crying and refusal to eat.
