It started as a headache. By evening, James was unresponsive to his name

I’ve come to consider James’ story as that of a young man who was both very unlucky and very lucky. Simon found him flailing on his bed, trying to get up and miming pouring himself a drink. He couldn’t make eye contact and was unresponsive to his name.

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Simon quickly called an ambulance, and by the time it arrived, James was so delirious the paramedics had to enlist our 18-year-old son to help restrain and strap his brother into a transport chair.

As all this played out, I was on the last night of a girls’ trip in California for my friend’s 50th birthday. We were scheduled to leave Los Angeles that evening, and unable to get on an earlier flight, we stuck to our original plans in a desperate attempt to pass the time.

We wordlessly moved through the Academy Museum, my friend holding my hand, and, it felt, my heart while I wanted to scream. The symbolism of Dorothy’s ruby slippers proved too much for this English teacher, and I instead drew solace from Jack Nicholson’s burgundy jacket from The Shining.

I had lost my mother and a brother too soon, and now the inescapable idea that now I was losing my son continued to circle.

I spent the entire 15-hour flight staring at the map on the screen in front of me, willing the tiny plane icon to move faster.

As we finally commenced our descent into Melbourne, a new fear overcame me – what messages I would receive from Simon when I turned my phone back on. And then the counter-thought: if the news was really bad, he wouldn’t text me. He would be at the gate, waiting to tell me in person.

Thankfully, he wasn’t there, and I took it as a sign that the worst had, at least for now, been avoided.

After what felt like the longest car ride of my life from the airport to the hospital, finally I was by my pale and unconscious son’s side.

The infectious disease team confirmed James had meningococcal B strain, a rare but dangerous disease. The vaccination for this strain is part of the National Immunisation Program for all children and teenagers in South Australia and Queensland, but in every other Australian state and territory, parents must pay between $200 and $400 for the required two doses.

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Though this deadly disease only afflicted 15 people in Victoria last year, it kills one in 10, and leaves one in five with limb loss or brain damage. Over the past decade, more than 1000 Australians have contracted the meningococcal B strain. James was lucky, but the experience is a cruel coda to his teenage years, and an entirely avoidable one.

Like hundreds of thousands of Victorian children, James lost core years of his young life to COVID-19 lockdowns. We followed the restrictions to the letter, getting all the required jabs as we “vaccinated our way out of this”, despite the immense personal cost to our sons who were, for the better part of two years, effectively resigned to living in their bedrooms.

Then and now, I believed in what we did as a state, proud to live somewhere that prioritised the needs of every citizen when deciding that sacrifice was worth it to save as many people as possible. But to learn that a vaccination for a disease that is so deadly – and so damaging to those lucky enough to survive it – is available, yet not included in the immunisation program in Victoria troubles me deeply.

After four days in intensive care and a further four on a ward, we were finally able to take James home for the slow recovery he now faces. But as his recovery confines him to yet more time in his bedroom, I can only urge a rethink. Surely, our young people have already suffered enough.

Fiona Hall is a high school teacher based in Melbourne.

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