Despite a relentless five-year education campaign driven by Larraine Pocock, founder of the Troy Pocock Meningococcal Foundation, cases still threaten lives.

The illness in babies is among the most difficult to detect because they can't communicate their symptoms.

Earlier this year Rebecca Machon from Narrawallee went through the most horrific ordeal of her life when her six-month old baby boy contracted meningococcal.

She hopes her story will encourage other parents to think of meningococcal when diagnosing their sick children.

Baby Jackson's symptoms were similar to those many babies suffer when teething. Even the timing was aligned with his six-month teeth.

"He just didn't seem himself. He wasn't feeding properly and the night before he was a bit grizzly. I thought he was coming down with a cold, or getting teeth," Ms Machon said.

"He was arching his back a lot and getting worse so, afraid he might dehydrate, I took him to Milton Hospital."

A doctor saw Jackson and suspected pneumonia, so he administered an injection of antibiotics, which in hindsight probably saved the baby's life.

Jackson's health continued to deteriorate so he was taken to Shoalhaven Hospital.

"Meningococcal was in the very back of my mind, but I didn't suspect that's what it was, not until 4.30pm, when I saw spots on his face, foot and under one arm.

"The spots were about one centimetre in size. I had a meningococcal information card in my purse and they looked the same as the ones on the card," she said.

Ms Machon told medical staff about the spots and shortly after plans were made to airlift him to Sydney.

"I was pretty distressed. He was going downhill real fast and they couldn't airlift him until 11.30pm because it took a long time to stabilise him," she said.

The next 24 hours is a blur that resulted in Jackson being admitted into the intensive care unit and placed into a medically induced coma at Westmead Children's Hospital.