The woman, who did not want herself or her family identified, said her youngest child - who has since turned one - had been "happy and bubbly,'' despite having a cold in July.

But her symptoms became much worse, and quite suddenly. The little girl came down with a fever and what appeared to be a heat rash.

"We noticed the rash changing colour within an hour or so," the mother said.

"It started to darken, and when we pressed on one of the spots, it wouldn't disappear - so we knew there was something wrong."

She was taken to John Hunter Hospital, where she was given antibiotics to start treatment for meningococcal. It was later revealed to be the B-strain of the disease - the only strain not currently covered by the National Immunisation Program, and the same strain that recently claimed the life of Quirindi toddler, Donald Peach.

So far this year, there have been five cases of meningococcal B in the Hunter New England region.

Four of those cases were diagnosed in July alone.

The little girl was flown to Westmead Children's Hospital in Sydney, where she improved "day by day", before being transferred back to John Hunter.

"If it weren't for the dedicated staff, our little girl wouldn't be here right now," the mother said.

"My daughter was healthy. She had never had anything wrong with her. She had all her vaccinations up to date.

"It started as a simple cold, then a fever, feeling unwell, and then a rash.

"If you think there's something wrong with your kids, go with your gut feeling, and take them to get checked.

"It's better to be safe than sorry. It's a horrible feeling to think your baby will never come home again. It's scary as hell to go through this. I'd never wish this on anyone."

She said the B-strain vaccine should be funded "for everyone".

"Something has to be done about this, sooner rather than later," she said.

"We are so grateful she is still here with us."

Since July 2017, the vaccine for meningococcal strains A, C, W and Y has been added to the National Immunisation Program.

Meningococcal B is the most prevalent strain of the disease in Australia, but the Pharmaceutical Benefits Advisory Committee (PBAC) has rejected three attempts to add the vaccine to the schedule.

Emma Oswell, a practice manager at a Hunter medical centre, said she was responsible for ordering all of the vaccines, and had noticed a "big increase" in patients asking for the meningococcal B vaccine, Bexsero - which typically costs between about $115 and $130.

"I would say it has gone from zero to at least 20 requests a week, depending what has been on the news," she said. "But we would order the vaccine and sell it at cost price, just to service the community, and I think word got around a little bit.

"But we did notice a substantial increase."

Ms Oswell said she had paid for all of her children to get all of the meningococcal vaccines.

"With the meningococcal B vaccine, you need at least two - depending on the age of the child. At $115 for each vaccine, for three kids, it cost me nearly $700. And that was at cost price," she said.

"But the cost is nothing in comparison to the peace of mind it gives you.

"The B strain vaccine is something that should be on the schedule."

Local nurses who spoke to the Newcastle Herald said while they had not necessarily noticed a huge increase in the number of people requesting the vaccine, they all agreed it should "absolutely" be added to the schedule.

They said some practices had made a point of promoting the vaccine more in the past 12-to-18 months after a spike in cases.

Karen Walsh, a registered nurse from Port Stephens, said cost was the "biggest factor" for patients.

"You have to have at least two vaccinations for the B strain, and sometimes a third, depending on age. So it's a huge cost. If you have a family of four, on a normal income, it can become a real issue," she said.

"I worked in the John Hunter emergency department for 25 years, and I have seen meningococcal in kids, and adults. I think it should be given to everyone."

Eliza Ault-Connell, the director of Meningococcal Australia, said Federal Health Minister Greg Hunt has said if PBAC gave Bexsero the "green light," he would add it to the schedule.

"Bexsero has now been considered three times under PBAC, and each time it hasn't come back with a positive outcome," she said. "They are not safety reasons. It comes down to cost, unfortunately. That is really disappointing - and difficult - for parents who have gone through the disease with their children, to hear that their child's life isn't being considered valuable enough to prevent the disease in the first place."

Ms Ault-Connell said it was a safe and effective vaccination, and the best way to prevent meningococcal B disease. Bexsero would be considered by PBAC again later this year.

"When the UK implemented this vaccination program back in 2015, they saw a dramatic drop - and I mean a dramatic drop - in meningococcal B cases. We are dropping the ball here," she said.

"Unfortunately, some parents are simply not aware that the NIP vaccines don't fully and adequately protect their child against all strains.

"They are protected against four other strains, but not the most prevalent strain. It doesn't seem right."

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