Mrs Bodey was asking her 21-year-old son what food he wanted to eat during the week, ahead of the Sunday night shopping.

“He said he wanted frozen meals and I was trying to tell him we’d have to start eating more fresh food,” she said. 

Husband Darren was already enroute to the supermarket when Zac started to get aggressive. 

“He started banging on the walls, so I intervened,” she said. 

“That’s when he grabbed my hair and pulled a big chunk out.”

After a 10-minute standoff in the kitchen, the family had to call the police to help calm Zac down.

This wasn’t Zac’s first “meltdown” and certainly won’t be his last. 

He is one of 200 Victorians with the rare genetic disorder Prader-Willi Syndrome (PWS). 

People living with PWS suffer from insatiable hunger and heightened anxiety, which can result in violent outbursts.

Regardless of what Zac eats or how often, his appetite for food is never satisfied. 

Mrs Bodey has padlocked the fridge and the cup-

boards in her house in fear Zac will eat himself to death. 

“Despite all the bad things that happen, I still think Zac is beautiful,” she said. 

“He is pretty remorseful afterwards. He can have these meltdowns ... but I still get up the next day and love him.”

For the past 21 years, Mrs Bodey and her family have fought with the government and the public to understand the rare condition. “They make us fight for funding every year and it puts huge stress on the family ... they just fail to understand,” she said.

“It’s just this continuous battle for awareness and I feel like we’re in this vicious cycle.”

The Bodey family, including Zac’s siblings Kaine and Charlotte, moved from Geelong to Ballarat in 2004.

Zac was enrolled at Ballarat Specialist School and completed his education in 2012. 

Between 2013 and 2014, Zac began participating in Ballarat day programs, none of which lasted more than a few months. 

“He’d do really well for the first six months and then he’d have a meltdown and he’d leave the program,” Mrs Bodey said. 

“Everything needs to have a set order in Zac’s life.”

After realising day programs were not working for Zac, Mrs Bodey rented a private unit for him to live in with a carer. 

But after an incident with one of his carers last Thursday, Mrs Bodey decided to bring Zac home indefinitely.

“Zac needs one-on-one care 24/7 and sometimes he needs two-on-one care,” she said. 

“We’ve done everything ourselves, day in, day out and we’ve had two other children to raise.”

Mrs Bodey is now advocating for the Depart-

ment of Health and Human Services to build a specialised Prader-Willi Syndrome house with carers in Ballarat. 

“There is no day program suitable for Zac, but (the department) spend thousands on behavioural specialists, IQ tests and case managers,” she said. 

Last November, the DHHS provided funding for five days of one-on-one care for Zac.

“I would love to see one of these houses built and I don’t think there are any other solutions,” she said. 

kara.irving@fairfaxmedia.com.au