“Somehow my baby fought through, but she has an acquired brain injury and is still suffering the effects 10 years later,” Papas said.
“She spent the first few years of her life in hospital for rehabilitation therapy, she had to learn how to swallow again. She still has problems with speech, walking and running, and severe migraines.
“They say it’s a rare disease, but it doesn’t feel rare when you’re watching your child suffer.”
Johanna Papas
“I’m now telling my story to raise more awareness about the signs and symptoms of meningococcal, and what to look out for.”
Three days before her own harrowing experience, Papas said she had read an article discussing another parent’s experience.
She said if she hadn’t read that story, it’s likely her own situation would have been much worse.
“They say it’s a rare disease, but it doesn’t feel rare when you’re watching your child suffer and you don’t know how things are going to pan out,” she said.
“Most parents think they’ve heard of meningococcal but at the end of the day there are enormous gaps in what we know.
“The symptoms are not always textbook.”
In 2025, 56 cases have been diagnosed across Australia, seven of which were in WA.
Young children aged from birth to four years old and teenagers aged 15-19 are at highest risk.
Johanna Papas with her now 10-year-old daughter Alijana.
While most people survive, meningococcal disease can prove fatal in up to 10 per cent of cases within 24-48 hours.
Meningitis Centre Australia chief executive Karen Quick said new research had highlighted low awareness of the condition, with nearly half of young adults aged 18 to 24 unable to name a single symptom.
One in four parents of children aged 0-4 were also unable to name a symptom.
Quick said the disease could progress rapidly, often making those impacted critically ill within a day.
“While the rash is the most commonly known symptom of the disease, it is often the last symptom to appear or doesn’t appear at all,” she said.
“Other symptoms like fever, headache and vomiting may signal a meningococcal infection.
“Whether you’re a parent, teacher or coach, we all have a role in raising awareness. The more we talk about the symptoms and different types, the better chance we have of protecting young people.”
High-profile Olympians have also joined forces with health experts and survivors to raise awareness.
Paralympian Jay Dohnt had both legs amputated below the knee after contracting the infection at 13 years old.
He is now pushing for better awareness, alongside Olympian Libby Trickett.
“I have taken one of my own children to hospital emergency when they developed a fever and a rash,” Trickett said.
“Thankfully, it was something else, but I acted quickly because I know meningococcal disease can progress quickly, and it can be devastating.
“I did not want to take any chances.”
Papas said she hoped her story would educate and inspire others to demand a second opinion if they felt something was wrong.
“Parents know their own kids,” Papas said.
“I would have loved to have been wrong.”
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