You sit through some of the most heinous details of human degradation and wonder what type of people exist in our world.

You sit with families who have lost loved ones in sudden, random and shocking circumstances, and witness the excruciating pain of loss and confusion and grief.

Sometimes the circumstances are not their fault; sometimes they are. I don’t know which makes it more tragic and painful.

I only know there is a something forever changed in people and it is particularly devastating when the person lost is young or leaves behind a shattered young family.

The examples are myriad: a teenager killed on work experience, a toddler drowned while wandering off from his dad, a young man falling to his death from a balcony, a new father killed in a truck crash never to return to his two kids.

Little Arthur Long was going to be one of those difficult stories to share, I thought.

Shortly before his second birthday, Arthur contracted meningococcal and was left fighting for his life in intensive care.

His parents Nathan and Carly were told to say goodbye as he lay critically ill, hooked up to machines keeping his heart pumping.

Arthur pulled through but the disease had laid waste to his feet. They had to be amputated along with most of the fingers on his right hand. He also lost his spleen.

Knowing all this, photographer Paul Scambler and I assumed this was going to be another one of the hard interviews we had shared and supported each other through.

As dads to boys ourselves – my boys bookending Arthur’s age – we were devastated for the family and for Arthur.

We figured we would be confronted with a sick and sad little boy and parents shattered by such a spiteful disease. How absolutely wrong we were: Arthur was a whirlwind.

He charged through the house playing with his dog, pushing his diggers and showing off his books. He barely sat still. The photo that Scambo snapped was amazing.

Arthur was literally in that pose for three camera clicks and Scambo summoned all his skill of timing and persuasion to get it.

Perhaps I’m biased for having witnessed it, but of all Scambo’s pics from 30 plus years, I cannot think of a better one.

With Scott Gelston’s follow up effort a few months later, they capture the cheekiness, confidence and hopefulness of an inspiring little man – Arthur the Brave we tagged him.

Arthur’s mum and dad were no doubt the source of his optimism and lust for life.

Despite the trauma endured for many months, they were overwhelmingly positive and focused on how lucky they were.

Lucky that when Arthur, who had been a little sick during the day, went “off the cliff” health wise that night, they got him to the Launceston General Hospital quickly.

Lucky from there that he got a big dose of antibiotics just in time and superb care.

Lucky that he was flown to Melbourne’s Royal Children’s Hospital, a world leader in the intensive care Arthur needed.

Lucky the infection was septicemia not meningitis that can cause brain damage.

Lucky that surgeons were able to amputate at the ankle rather than through the shin, which would have led to many complicated surgeries until he stopped growing.

Lucky that of all the internal organs to lose, the spleen is one you can live without.

Lucky that Arthur was alive.

But they were also upset that the health system that was so terrific in saving Arthur’s life was also the health system that did not properly explain meningococcal and its various strains. Arthur was inoculated against other strains but not strain B.

They questioned how a simple inoculation could have prevented the whole ordeal and why that wasn’t better articulated.

Meningococcal is an infection of nightmare: a disease that starts off masquerading as common, inconsequential illnesses but can make people critically ill within hours.

Tasmania has seen a spate of cases. Five of the nine cases this year were strain W, which is much higher than the national rate.

That moved the state government to offer free vaccinations for strains ACWY. It should be praised for this and its prominent education campaign.

While the rate of meningococcal B infection is similar to the Australian rate and a vaccine is available on private prescription from a GP, it is expensive – up to $240.

I’m unclear on the reasons why strain B costs parents but strains ACWY does not. I know parents are confused too and for some with several children, the cost is prohibitive.

Three Tasmanians have been affected by the B strain this year, including the most recent case of a 15-year-old Launceston boy.

These cases will push all levels of government to subsidise vaccines for the B strain.

It might be a relatively low risk disease but its consequences are potentially devastating. 

Prevention against all strains is a must.