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Austin’s story

Austin O’Connor-Stubbs suddenly lost his central vision as a teenager due to Leber’s Hereditary Optic Neuropathy (LHON), a rare genetic condition. Nevertheless, he remains positive about the future.

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Seventeen-year old Austin first noticed something was wrong with his vision in mid-2012.

“I was setting up to take a mark at footy. When the ball was four metres away from me, it suddenly disappeared. Next thing I knew, it had flown past my shoulder,” he recalls.

“We went to the optometrist and he said straight away that I had a massive blind spot – it was a huge shock.”

Further testing revealed that Austin had Leber’s Hereditary Optic Neuropathy (LHON); a rare and untreatable form of blindness that affects mostly adolescent males.

Within a matter of weeks, the sports-mad teenager had completely lost his central vision, and was legally blind.

“I still have 15% of my vision but it’s only the periphery; I can’t see anything in the centre,” he explains. “It’s super frustrating, especially losing my hand-eye coordination.”

Despite his vision loss, Austin is still playing football and ran the half-marathon event at the 2013 Melbourne Marathon festival. Running unassisted, he raised much-needed funds for the Centre for Eye Research Australia (CERA), where he is volunteering in a research study.

“Donations are an essential funding source for medical research. In the case of LHON, philanthropic funding will allow us to increase our research effort in this rare but potentially blinding disease,” says Managing Director and fellow runner, Professor Jonathan Crowston.

“CERA is one of only a few groups worldwide conducting research into LHON. “With the support of patients like Austin, we can move closer to finding a cure for this and other devastating eye diseases,” says Professor Crowston.

Despite the challenges his condition has brought to his life, Austin remains positive about the future.

“In some ways I’m glad it happened,” says Austin. “It’s changed my attitude a lot; I’m a lot less negative now and I try to focus on the positives in life.”

Mum Maureen O’Connor sums it up well. “He’s amazing. We’re so proud of how well he’s coped – he’s been fantastic.”

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