“I’ll never be able to hold his hand again.” Mum’s plea after her boy lost four limbs.

Video by ABC

Robbie was just five and a half months old when he was placed into an induced coma.

It was there, in a Perth hospital, that Robbie’s mother Desiree Scofield, 25, discovered the disease her little boy was suffering from, meningococcal B, could have been easily prevented with a simple vaccine.

She was heartbroken.

But also furious. Because this crucial information – learnt only by Googling the disease from the hospital where Scofield’s infant son was fighting for his life in 2014 – came too late for her son.

“We watched his limbs die in front of our eyes within two hours of getting to hospital,” the married mother-of-two tells Mamamia.

As Robbie’s tiny body began to respond to the antibiotics, he was placed in an induced coma for two months to assist his recovery. It wasn’t until a year later, when he was stronger, that he could have his little limbs amputated.

LISTEN: Holly Wainwright and Andrew Daddo unpack the causes and repercussions of meningococcal. Post continues below.

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“I’ll never be able to hold his hand again,” Scofield recalled thinking at the time. Of course, it’s a thought that still occurs to her every single day, as she performs occupational and physical therapies on her son.

“That’s an aspect people don’t think about when it comes to meningococcal disease, ” she says. “One of the biggest issues of the disease is the long-term damage it does to families.”

Altogether, the now three-year-old was in hospital for 18 months. In that time, Robbie missed out on normal socialisation, which is why he now requires speech therapy every day. Caring for her son is a full-time job for Scofield, who is also mum to six-month-old Luna.

The devastating, long-term consequences of the disease are why Scofield is determined to ensure meningococcal disease doesn’t rob another family of what could have been a cheerful, peaceful future – one without endless hospital visits, without exhausting and expensive therapies, and with a little boy who could run and play like other children his age.

Scofield is now working with Meningitis Centre Australia to raise awareness and to petition the government about the available vaccines.

What is meningococcal disease?

Statistics obtained by Mamamia from the Department of Health show that the number of meningococcal disease cases in Australia rose by nearly two-thirds in the last year, increasing from 252 in 2016 to 383 in 2017. The number of deaths also rose from 11 to 28.

So far this year, there have already been 14 reported cases of meningococcal disease.

The figures have not been this dire since 2006.

Graph of Meningoccocal Stats Australia
Statistics on the reported incidence of meningococcal strains in Australia. Source: Department of Health

With this steady rise in mind, it's important to understand the nature of the disease. In essence, it is a very serious infection that occurs when the meningococcal bacteria ‘invade’ the body. It then usually appears as meningitis or sepsis.

Meningitis is an inflammation of the protective coverings of the brain and spinal cord. Sepsis is blood poisoning, which is a more widespread infection throughout the body.

Meningococcal disease can occur at any age, but babies and children less than five years of age are most at risk. Teenagers and young adults aged 15-24 years are also at increased risk.

The four most common types of meningococcal disease in Australia are B, C, W and Y, but there are also the strains A and X. According to the Department of Health website, all strains of the illness can develop very quickly and can be fatal in 5-10 per cent of cases.

So with an outbreak of the W strain in parts of Australia, 2017 saw the deaths of too many young Australians, including 19-year-old Lloyd Dunham, a young woman in her 20s, and a child.

What vaccines are currently available?

Vaccines for meningococcal disease are available in Australia for the A, B, C, W and Y strains. There is a single-shot quad vaccine for ACWY, one for B, and one for C.

But despite the availability of these vaccines, only one is on the National Immunisation Program (NIP): the C strain.

The quad vaccine for ACWY and the vaccine for B are not currently subsidised by the government, and can cost anywhere between $100 - $300, depending on the location of purchase and whether boosters are needed.

In response to the outbreak of W, four states and territories have started a ACWY vaccination program for affected communities.

The C-only vaccine was introduced to the NIP for all babies at 12 months in 2003, when this strain was most common in Australia. Herd immunity developed against the strain as a result, and the incidence of C significantly decreased.

This success makes Scofield even more bewildered as to why the Federal Government won't put all of the available vaccines on the NIP.

"Why won't the government do that for meningococcal B, which is now most prevalent? Parents have to pay if they want their child protected against the ones other than C, it doesn't make sense and is very unfair."

What needs to be done?

Scofield argues every Australian family needs to have an equal opportunity to protect their children. And the way to do this, she says, is by having all vaccines for meningococcal disease available on the NIP.

"The Federal Government needs to step up and do their job, and make it accessible to everyone."

Scofiled is determined that no other family goes through what hers has with Robbie. She says she was terrified her baby daughter would suffer the same way as her brother, and so she and her husband paid for every vaccination themselves.

"It's very short-sighted to focus purely on the cost when you need to look at the cost to families — not only emotionally, but financially — for those who are affected by meningococcal, whether it's loss of limbs, blindness, or developmental delays," Scofield says.

"How many Australian kids need to die or get sick to satisfy the government?"

Scofield also believes that having all the vaccines on the NIP would do wonders for raising awareness for the disease.

"By adding to the vaccine to the NIP, you're also educating parents about these diseases."

The petition from Meningitis Centre Australia.

Lisa D'Cruz from Meningitis Centre Australia explains why, with the help of Scofield, they last month started a formal petition to the government for greater access to the vaccines. As of Friday morning, the petition had 4000 signatures.

"If there's a vaccine, it's a preventable disease. And it's not just fatalities we need to be concerned about. The disease throws your body into a tornado for 24 hours. Then you can go blind, deaf, have cognitive problems, and develop mental health problems," D'Cruz says.

"There's a good chance meningitis patients will end up needing disability support from the government, so they need to work in the national interest - that's why they're there. In order to build up herd immunity we need the vaccines on the NIP."

A spokesperson for federal health minister Greg Hunt tells Mamamia he is working with the medical and pharmaceutical sector on adding new vaccines to the NIP.

"Under legislation made by the Australian Parliament, the Government can’t include a new vaccine on the National Immunisation Program unless it has first been recommended by the independent Pharmaceutical Benefits Advisory Committee," they say.

When asked specifically whether the quad vaccine for types A, C, W, Y would be introduced, the spokesperson was "optimisitic".

"It is in the hands of the medical authorities at the moment. But the indications are very positive and so I'm optimistic that we will be able to have this well in time for next year's season."

How Robbie is today?

Robbie is a happy and healthy child, Scofield says. And when she thinks about his future, she wants him to know what his legacy will be.

"He's saved so many lives. I want to be able to say to him that what's he's gone through made a real difference to people's lives in Australia."

If you want to help eliminate meningococcal disease in Australia, you can sign Meningitis Centre Australia's petition here.

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