Auckland 8-year-old and Cure Kids ambassador Eva Mitchell, who has also been battling superbug MRSA, today met with All Blacks Damien McKenzie, Ben Smith and Julian Savea. Photo / Meek Zuiderwyk
Eva Mitchell's family don't like to talk about the future.
They instead treat every day they have with their courageous 8-year-old as their last, packing it with fun, laughter and games.
When Eva wanted to marry her imaginary friend Ben last year, mum Tiff Mora helped arrange a touching wedding ceremony at their Auckland home.
There's a good reason for the approach: when Ms Mora was 20 weeks pregnant with Eva, she was told that her child, who had a massive hole in her left diaphragm, likely wouldn't survive.
Despite her severe condition of gastrointestinal failure, which caused her stomach and bowels to shut down, Eva lived on, surviving off a line that fed nutrients directly into her blood stream.
On top of countless scares, sleepless nights and hospital visits, her family never counted on Eva being struck with something else just as awful - superbug Methicillin-resistant Staphylococcus aureus (MRSA).
"She just got so many different infections that her body hasn't been able to keep fighting them - she's been on antibiotics more than she's been off them for the last three years," Ms Mora said.
"And when we talk about antibiotics, we are talking about long-term intravenous infusions for an hour at a time every eight hours, not just the little pills you take for a chest infection."
Each time an access point for her line became infected by the antibiotic-resistant bacterium, doctors had to take it out and find another spot in her stomach to insert it.
"It has been pretty stressful, pretty frightening ... as a parent you just find you've become numb to it all as you feel in shock the whole time."
Last month, the family had to make the call to take the line out for good, opting instead for Eva to get her calorie-rich sustenance orally.
"Part of me was relieved because the risk of MRSA infections had haunted us for so long - I'd been up every night checking for them for years - but then it's been a massive juggle trying to make sure she's getting as many calories as possible."
The impact has been apparent: her weight has dropped from 36kg at the end of last year to 23kg today, with no other alternative to help her gain it back.
But Eva's spirits had failed to flag.
"There's something magic about her, and she certainly doesn't see herself as sick," she said.
"The only thing she's petrified of is things in hospital, because she has been through it all so much with her line infections."
Eva is now fronting charity Cure Kids as one of its ambassadors and today joined All Blacks Ben Smith, Julian Savea and Damian McKenzie for a promotional photo-shoot.
"She's done a few shoots with them already, and though they're such heroes to kids, they're also just big playmates for her," Ms Mora said.
Ben Smith said: "When you spend time with someone like Eva, it makes you realise just how much some kids go through.
"She's a real inspiration and it's awesome for us to be able to get in behind Cure Kids and the work they do to help kids like Eva."
Ms Mora said her family would go on not worrying about Eva's future, but making the most of today.
"She has taught me what's important, and it isn't having the latest gadget or shoes, it's the people around us.
"If we can make just one person realise what these kids go through, or encourage one person to donate money and help make a difference to finding cures, then Eva's whole fight has been worth it."
To little Eva, Dr Siouxsie Wiles isn't an Auckland University microbiologist, but "Siouxsie the superhero".
"We keep saying we are going to draw a little cartoon of Eva, some bugs, and then Siouxsie in her superhero costume fighting them," Ms Mora said.
The prominent scientist is leading a two-year, $100,000 research programme, funded by Cure Kids, that aims to combat antibiotic-resistant superbug Staphylococcus aureus (SA).
New Zealand has the highest rates of SA in the developed world - related skin and soft tissue infections result in 700 children under 5 admitted to hospital each year, with thousands more treated in primary care.
In collaboration with Landcare Research fungi expert Bevan Weir and Auckland University chemist Brent Copp, Dr Wiles plans to mine a bank of just under 10,000 different species of fungi, native to New Zealand and the Pacific, following international findings that some fungi have been found to be able to kill SA.
The research will draw upon a specially cultivated form of bacteria in the lab that has been engineered to glow when alive, enabling Dr Wiles and her team easily determine whether the bacteria is alive or dead.
"Antibiotics are the weapons microbes use to kill each other as they fight for space and nutrients," Dr Wiles explained.
"Penicillin, which was one of the first antibiotics to be used to treat people, is one of the weapons made by a fungus called Penicillium chrysogenum."
Last year, scientists in the US discovered a new antibiotic from microbes living in the soil in their garden.
"With 10,000 fungi in the Landcare collection, and many of them only found in New Zealand, there must be new antibiotics waiting to be found."
Dr Wiles said Eva's case showed how people with other illnesses were often very vulnerable to infectious diseases.
"The sad reality is that without antibiotics, these infectious diseases are going to kill people with serious medical conditions.
"This is what Margaret Chan, Director-General of the World Health Organisation, was warning about when she called antibiotic-resistance 'the end of modern medicine as we know it'."
Tim Edmonds, Cure Kids' research and innovation director, said the charity was supporting the research because it represented an opportunity for New Zealand to make a "potentially significant" contribution to what was an imminent global health emergency.
Last year, the charity funded the development of a method for rapid testing of a wide range of antimicrobials.
"It is exciting that this can now be used to screen a unique collection of native New Zealand fungi and rigorously test for new antibiotics," he said.
"We know the very real danger that increasingly resistant strains of bacteria place us in. We face the possibility of losing much of the ground made through medical advances in recent decades, because we can no longer rely on effective antibiotic treatment for patients."
To Ms Mora, the research was even more meaningful.
"As a mum, it's really humbling thing when she is there fighting the same thing your child is suffering from."
• To support Cure Kids, visit www.curekids.org.nz. Jamie Morton will be interviewing Dr Siouxsie Wiles this Sunday as part of Tauranga's Escape Festival. For ticket and event information, visit taurangafestival.co.nz.