As a naturally gifted and determined young tennis star, Arato dreamt of one day becoming a professional player – until he started missing shots he had once found easy. His coach told Arato’s father, Tim, that something odd was happening, which he could not explain.
“Immediately upon explaining it to me, I had a feeling what the problem was,’’
Only 18 months ago, Arato was diagnosed with genetic blindness. Tim recognised the symptoms because he also lives with the same condition. Stargardt’s Disease impacts your central vision and often starts in childhood with black spots in the centre of the child’s vision and sensitivity to light.
“It was 25 years ago when I was in full training as a triathlete myself,’’ Tim said. “My training partners could see that I was hitting objects on the road or tripping over things on the footpath, and so I had a similar problem."
“People often ask me, ‘Tim, what can you see?’ When I explain to them that I'm not walking around with a white cane all the time, but if you're standing a metre away from me, I can't see your face.’’
Arato now plays in Tennis Australia’s Low Vision Competition where he is experiencing great success. School is a bit more challenging, because he struggles to recognise the faces of his friends, which requires a lot of adjustment.
Mum, Junko, holds out hope for the research being done in the Eye Genetics Research Unit at Children’s Medical Research Institute. Professor Robyn Jamieson was on the team who delivered the first ever gene therapy for a blinding eye condition in Australia and is leading the way in finding new treatments for many forms of genetic blindness.
“We heard about a clinical trial happening for children with Stargardt's Disease aged from 12 to 18, but Arato is only 10, so he’s still not eligible, but it's exciting that it's happening. I was so happy to hear about that research.’’
Tim said the family are getting behind Jeans for Genes to encourage people to invest in research.
“You know, I can't help but to make the comparison with the COVID vaccinations, how quickly when institutions and government work collaboratively together and fund the research at an appropriate level that how quickly we can develop vaccinations. Stargardt's Disease or macular juvenile dystrophies are extremely complicated, but it can all be linked back to funding.
“We remain hopeful there will be a treatment for Stargardt's and hopefully that treatment will enable Arato’s vision to be restored.’’
Jeans for Genes Day is on Friday 5th August this year. Sign up now to start fundraising or donate any time at JeansforGenes.org.au