When little Dean woke up on June 5 last year, with fever and vomiting, Madeline Cross and her husband Alex thought he had the flu and needed rest. By 2pm that day, their beloved boy was unresponsive – and he never woke up.

They’d never heard of pneumococcal meningitis – a type of meningitis that causes inflammation of the layers that surround the brain and spinal cord. They now know only too well the horror statistics – one in five people who contract pneumococcal meningitis will end up with “catastrophic disabillity”; one in 10 people will die.

Meningitis can be hard to recognise in the early stages. Symptoms can be similar to those of the common flu and can develop quickly, over a matter of hours. The main symptoms to look out for are fever, vomiting, headache, stiff neck, sensitivity to light, and drowsiness or altered consciousness.

“The signs and symptoms do not appear in a definite order and some may not appear at all which is why meningitis is so deadly,” Mrs Cross said.

“Dean was fully immunised at two, four and six months for pneumococcal meningitis as per the National Immunisation Program (NIP) and was an otherwise very healthy, happy and relaxed toddler. But the Prevenar 13 vaccine only covers 13 of the potential 90 serotypes of meningitis.

“We now know that there are more options for immunisation other than what’s on the NIP, including booster shots. You have to pay for them but it’s a small price to pay. We don’t know if it would have made any difference but … maybe.”

It’s almost a year since Dean died, and the family has received support not only from their relatives and friends but many others in the Gerringong community. Mrs Cross has also joined the board of the Meningitis Centre Australia in an effort to better understand the disease that took her youngest child’s life.

She’s now reaching out to others, by forming a support group in the Illawarra for families affected by this devastating disease.

“It was harrowing,” she said. “He was flown by Careflight to Randwick children’s hospital and we spent two shattering days in ICU. We were told that the outcome was likely to be catastrophic brain damage or death. It was like a nuclear shockwave had hit me.

“After a brain scan showed no activity, we were dealt the final blow. The night before we were to turn off the life support, the nurses brought a bed into his room so my husband and I could sleep beside him. We took turns to be close to him – to kiss him, to touch him. It was brutal.”

The funeral of the little boy who loved adventure was attended by over 1000 people. To his siblings Josie and Boyd, 6 and 5, and his parents he will always be with them. “We hold Dean in our hearts, and Josie and Boyd in our hands, as we create a great future for our family,” Mrs Cross said.

In honour of Dean, Mrs Cross plans to continue helping others, and advocating for improved access to vaccines, through her work with the Meningitis Centre Australia.

“The centre is based in Perth and there’s not much activity on the East Coast,” she said. “I want to start with an Illawarra support group and let it grow from there.”

Those interested can get in touch with Mrs Cross via info@meningitis.org.au.