Carly and Nathan Long's two-year-old son Arthur could have been protected against deadly virus meningococcal W, had they known a vaccine existed.
Now the Tasmanian parents are trying to raise awareness to save other parents going through the anguish they experienced when Arthur contracted the virus.
When the little boy woke one Saturday morning in February this year with flu-like symptoms, his mum and dad had no idea of seriousness of his illness.
"He was just a bit clingy and grizzly, as a normal toddler would be if they were getting a bit of a flu," Carly told ABC.
A GP who came to the house said Arthur was coming down with a virus. But when Arthur's condition got worse and he became lethargic and limp, throughout the day. and his parents decided to call Launceston General Hospital for advice.
Hospital staff asked Carly and Nathan if his lips were blue or if he had a rash. "He didn't really – if anything his lips were pale but they said, 'Yes, you need to go to the hospital straight away,'" said Carly.
It wasn't until after they arrived at the hospital that a rash appeared, indicating that the bacterial infection was working its way through Arthur's tiny body, shutting down his vital organs.
Doctors arranged for Arthur to be transported to the Royal Children's Hospital in Melbourne, unsure whether he would survive the journey. "I don't know how to explain it," said Nathan. "We didn't think we were going to have Arthur."
Arthur spent the next 10 days on life support, and was in intensive care for two weeks, as doctors battled to save him from the ravages of meningococcal W. And although he has come out of the battle with his life, he is forever changed. Arthur's hands are damaged, and his feet will be amputated in a few weeks.
And although they're relieved to still have their little boy, Carly and Nathan were devastated to hear that his illness could have been prevented with a simple vaccine.
"To find out Arthur had meningococcal we were kind of in disbelief really, and then to find out later after we came here that he could have been immunised against it, was sickening really," said Nathan.
Immunisation against meningococcal W is not currently on the national immunisation schedule, nor is its availability widely advertised. That's something Arthur's parents are determined to change.
"I'd love to see it added to the national program," said Carly. "I'd hate to see this happen to anyone else."
"At minimum, every time you take your child to get vaccinated you should be told these vaccinations are available."
Children are routinely vaccinated against meningococcal C at 12 months of age. The other four strains, A, B, W and Y all have vaccinations available but they are not subsidised. Each vaccination is available from GPs and cost around $100.
Most recent cases of meningococcal have been of the W strain.
For more information on meningococcal, see the Meningococcal Australia website.