kids

"You're on your own." Peta's son has a life-threatening condition, but help is hours away.

There are roughly 200 people living in the town of Nangus in the NSW Riverina region. There’s a general store that doubles as the Post Office and bottle shop, a service station, a little Anglican church and a primary school with 24 kids.

“It’s just peaceful, it’s tranquil,” says local resident Peta Zaric. “I mean peak hour traffic in Nangus is five cars at 3:00 in the afternoon when you go to pick up the kids, or when the cattle are out on the road. But that’s it.”

But as idyllic as her little community is, Peta, a former Sydney resident, has had a hard lesson in the limitations of rural living.

Video by SBS

Her five-year-old son, Cody, has been sick since birth. He lives with two genetic conditions. The first, Dent’s Disease Type 1, is a rare kidney disorder that can result in damaging levels of calcium in the urine, as the kidneys are unable to filter properly. This means Cody could one day require a transplant.

The second is a rare mutation found on his RANBP2 gene that causes encephalitis, or brain infection; he’s believed to be one of just 250 such cases in the world. Any sign of him being unwell means a trip to the hospital or GP to make sure it’s not an infection that could turn deadly.

With Cody’s regular bouts of bronchitis and pneumonia, it’s an incredibly stressful situation for the family.

“He can wake up in the morning and have an ear infection, and 90 per cent of the time by the afternoon he’s come down with pneumonia. He can just go down really quickly,” Peta said. “So the second he shows any symptoms that he’s not well. We have to jump on it right away.”

Cody currently takes three medications a day, including broad spectrum antibiotics that aim to keep infections at bay, in particular those in his chest and kidneys. He also uses a saline nebuliser twice a day to keep his airways open.

Cody and Bree. Image: SBS.
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The condition has also limited Cody's growth and development; he's "fallen off the charts for height and weight", which is plain to see when he stands alongside his twin sister, Bree. Peta may soon have to start injecting him six days a week with growth hormones until he's at least 14.

"Cody honestly would have to be one of the most resilient kids that I know. But like a lot of us, he has a phobia of needles," she said. "The second we pull up at a doctor's surgery, he goes into a meltdown...

"I don't know how I'm going to go injecting him every day of the week for the next seven or eight years."

"We've got nothing."

Peta's family are featured in the new season of SBS's four-part documentary series Struggle Street, which the mother of two hopes will draw people's attention to the lack of healthcare resources available to rural Australians.

As seen in the series, Peta spent last year driving Cody to physiotherapy, occupational therapy and speech therapy in Wagga Wagga five days a week, an hour-long trip in each direction.

Now that he's started school, that's down to two days a week. But there are still regular visits to specialists, all of which are based in Sydney (nearly five hours away), Canberra or Melbourne, and charge hundreds of dollars a visit.

Peta's partner Ricky, a truck driver, takes as much work as he can, so that Peta can care for their son. And they have support from an organisation called Country Hope that assist with occasional fuel costs or mounting bills.

"I don't know where I'd be sometimes without them, to be honest. It's pretty hard," she said.

"But I'm not putting our story out there for sympathy. I'm doing it because so many rural families go through this. We're all in the same boat. We have no paediatric specialists here. And when we do get an occasional outreach visit, as they call it, you're paying hundreds of dollars upfront to see them.

"After that you're on your own. You have to travel. There's nothing here."

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Peta. Image: SBS.

People question why they've stayed.

Should Cody need a transplant, then yes, Peta says they'll make the move to a city.

But until then, Nangus is their home; it's where Cody's friends are, where Bree's friends are, their school, a place where everyone knows their family's story and supports them.

"In a fair world, I don't see why the country should have to miss out compared to the city. I don't see why we have to go without," she said.

"They're essential services, you know. It's not like we're asking for a new theme park or something ridiculous to be built. We're just asking for the same general services everybody else has access to... But [the government] just simply forgets us. We've got nothing."

That's why Peta hopes MPs, in particular, will see her story. That they'll see what her little boy has to go through just to stay relatively well, how far he has to travel to see someone who can provide the care he needs.

"We're adults, and we struggle with it. It's a lot of stress on the kids too, having to go so far all the time. And there's nothing worse than being away from home. That's half the battle," she said.

"You're away from home, you're stressed, you're tired, it costs a fortune, you're backwards and forwards all the time.

"There's got to be a better way."

The new season of Struggle Street premieres at 8:30pm Wednesday October 9 on SBS and will be available to stream on SBS On Demand.

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