A code of silence broken

Chris 'Tubsy' O'Hara and his family are aiming to shine a light on CJD, and awareness of the disease that claimed the life of his eldest brother (inset). 200224 Picture: RUSSELL BENNETT

When Kooweerup cricketing icon Chris ‘Tubsy’ O’Hara produced a defining, all-around performance on the big stage against Cardinia in the 2014 WGCA Premier grand final in Beaconsfield, his big brother Stephen was dying in a Melbourne hospital from a disease with no effective treatment or cure.

This is a story that hardly anyone would associate with one of West Gippsland cricket’s cheekiest, larger-than-life characters.

But it’s one he’s now telling in the hope of raising some much needed awareness about, and funds for the fight against the disease that killed his brother at just 42.

Stephen, known by his friends and family as ‘Jake’, was a family man – a born and bred farmer from Katunga, in far north Victoria.

He was well known around the O’Hara family’s home region as a hard, unflinching footballer who’d go out of his way to help the community and its people.

He was a hard man, but one with a big heart – one full of love for his family, particularly his wife Colleen and son Lachie.

But five years ago – within the space of just six weeks – his life was stolen from him by an insidious disease known as CJD, or Creutzfeldt-Jakob Disease.

This rare, fatal degenerative brain disease doesn’t discriminate – particularly the ‘sporadic’ strain that Jake suffered from.

In fact, it’s one that a staggering 85 per cent of all CJD sufferers have.

The disease is caused by the ‘misfolding’ of a protein in the brain known as a prion, and even Tubsy still doesn’t know exactly what that entails.

Early CJD symptoms include memory loss, behavioural changes, a loss of coordination, and vision troubles, and while most sufferers will pass away within a year of being diagnosed, Jake died within weeks.

“You lose your bodily functions, and then the dignity of the human person really gets affected too,” Tubsy said of the disease.

“For Jake’s friends and his family – his wife and his son – that was perhaps the most confronting thing.

“Mum too – no parent should ever have to bury their child.”

Chris ‘Tubsy’ O’Hara, with his daughter Annabel. 191885 Picture: STEWART CHAMBERS

Tubsy is the youngest of three boys. Jake was the eldest, with Craig – or ‘Fez’ – the middle brother.

Straight after a game against Pakenham Upper/Toomuc in the 2013/14 season, Tubsy headed back home to Katunga with the family to celebrate Colleen’s birthday.

He and Fez could see there was something wrong with Jake, but they couldn’t pinpoint it. He was wearing glasses, which he hadn’t before, and his mannerisms had started to change.

“We went up there at the start of March (2014) and a couple of weeks later Jake had been getting these really bad migraines,” Tubsy said.

“He was a dairy farmer, and was having trouble functioning throughout the day.

“About three weeks after that he went in to see the doctor, and things weren’t good.

“He got transferred to hospital in the city, and by 18 April he’d passed away.”

After seeing his brother’s condition worsen so rapidly over that six week period, Tubsy said: “It was just so sad to see how this disease could turn such a strong man into just a shell of a person”.

Funds raised for the battle against CJD have been going towards improving diagnostic testing of the disease, and it’s hoped that one day they’ll find a cause, and ultimately a cure.

But, first, more people need to become aware of the heartbreaking condition.

“It’s one of those things that, unless a family member or someone you know is touched by it, you won’t know anything about it,” Tubsy explained.

“Chatting to one of the experts recently, she said the average age that it affects is 55 to 70, but there are lots of cases of it happening to younger people, like an 11-year-old overseas who died from it.”

Tubsy described his own personality as “a bit like a Jack Russell – nipping away at the ankles”, but said Jake was more forthright, more cutting with his humour, and much bigger in stature.

Jake, Tubsy, and Fez were each their own men, and didn’t always see eye-to-eye. But the love they shared was obvious, and Tubsy and Fez definitely looked up to their big brother.

“No parent should ever have to bury their child.”

Since Jake’s passing, his family and friends had taken part in the ‘City2Sea’ fun run in his memory.

After that event came to an end, they entered the CJD Fun run in Emerald late last month as ‘Team Jake-8’ – named after the license plates on Jake’s ute.

Unsurprisingly, another one of West Gippsland cricket’s great characters and proudest clubs got behind the cause, with the Emerald Cricket Club and its president Clinton Marsh stepping forward to host Team Jake-8 at Chandler Reserve on the weekend of the event – throwing open their rooms and bar, and providing barbecue food.
Vice president Michael Nell even took part in the 10-kilometre CJD run.

Tubsy estimated the team running or walking in memory of his brother was about 60-strong, but it must have felt to them like they had the strength of an army spurring them on.

All up, with the help of a fundraising page on ‘everydayhero’, they raised more than $13,000 for the CJD Support Group Network.

“When we’d do the City2Sea we’d go down there, have brekky, and drink VBs in the afternoon – that was my brother’s beer of choice,” Tubsy explained.

“That was the tradition, just one of those things getting back to reminisce and keep his memory alive – but you’re also checking in for each other, to make sure everyone’s going okay.”

This year, knowing the CJD event was starting up in Emerald, Colleen contacted the cricket club to see if Team Jake-8 could set up base there.

The Bombers threw the doors open, and Tubsy will be forever grateful.

“Marshy looked after us – we were rapt with what they did,” he said.

“They were fantastic, and next year we’ve got plans for a Jake-8 Crew versus Emerald Cricket Club Twenty20 – well that’s my idea, anyway.

“Hats off to them up there – they were magnificent, and it meant a lot to us.”

Many people rally behind a range of causes, but Tubsy explained that it’s sadly not until tragedy strikes that they take the initiative to get involved in raising money and awareness.

“I guess I don’t go out there and promote this big-time, but around the time of the walk I’ll contact family – cousins and the like – and they’ll support it,” he said.

“Friends have supported me being involved in the event, and the community back in Katunga have done the same for Col and Lachie, and in memory of Jake too.

“Everyone has their own causes or fights, and this has been ours.”

To make a donation to CJD Research, visit www.cjdsupport.org.au/fundraising/donate-online. For more information on CJD and its devastating impact on families, visit www.cjdsupport.org.au. To visit the Team Jake-8 everydayhero page, go to https://give.everydayhero.com/au/team-jake8-1.