This is Arato. He's 12-years-old and has been living with Stargardt disease since he was 9-years-old.
Please take the time to really see his photos for yourself. They show a young boy whose life is just beginning – but Arato is at risk of losing his independence. And one day – his dreams for the future.
"Hopefully they'll (researchers) be able to achieve cures or treatments for people living with disability, and show the world what is possible with science, and by helping others" - said Arato.
Arato’s been playing tennis with his mum, Junko, since he was four years old. His passion grew, and so did his skill, and now he dreams of becoming a professional player one day.
But he’s already a champion.
Arato recently returned home with a mix of bronze, silver, and gold medals after representing Australia in a Blind and Low Vision (BLV) tennis tournament across Europe. It’s hard to believe he was worried he couldn’t keep playing.
I thought my vision was totally fine, until my coach mentioned I was missing easy shots that I used to get”
said Arato
Fortunately, after Arato’s diagnosis, he discovered BLV tennis and went back into training.
At first, he struggled to adapt to BLV tennis because there’s different rules and the ball is spongy, slower, and has a bell inside. Today, he says he prefers it. “There’s a lot more variety of shots involved, and there’s also a great community. Once I get to know people and we’re on the court competing, they don’t treat me like a child, they treat me like any other player,” said Arato.
But this isn’t just a story about a young boy who loves tennis. This is a story about a young boy with his whole life ahead of him, only his eye condition means he’s losing his vision.
Like other inherited retinal diseases, Stargardt disease is a genetic condition that affects his central vision. It’s progressive and starts as a few black spots in the centre but can eventually lead to loss of the entire centre of vision, leaving only the peripheral vision.
Sadly, this is how Arato’s dad, Tim, who also has Stargardt disease now sees the world.
I was scared and worried at first because I didn’t know how it was going to affect me, but seeing my dad go through all that he’s gone through made me more accepting of losing my own vision"
said Arato
Now, Arato is a big advocate for his condition.
“I started telling my friends about it, so they know how I see and what my everyday life is like, but also so they know what it’s like for other people with vision loss. I also want them to know my achievements – it shows that even if you have a disability, you can do what you want,” said Arato.
While Arato’s positive outlook on his condition is inspiring, and BLV tennis gives him the opportunity to still do what he loves most,
the reality is, his condition will impact his education and career opportunities.
Because researchers have just calculated that people living with an inherited retinal disease like Stargardt’s disease, the cost of blindness is $5.2M per person over their lifetime – just to live an independent life.
Arato’s parents know first-hand how this can affect families, and one day, Arato will have to make choices to give him the best chance at a fulfilling life. This will impact his ability to play tennis. He might have to make some tough decisions in his final years at school and the career path he will take, and he’ll have to make choices about where to live and how he will commute or travel.
Arato’s dad, Tim, once had to make similar choices. He was a keen triathlete, and all that came to an end after his diagnosis. But today, Tim says, “Since Arato’s diagnosis, it’s made me reflect on my own, and he’s actually motivated me to accomplish more through sport myself. When Arato was diagnosed, he was always able to remain focused on his goals for tennis, but I didn’t do that and stopped participating in my sports. His diagnosis has taught me that there’s no reason why I can’t continue to excel in a sport. I’m pleased to say I’m back to competing and training as a triathlete, because of Arato.”
Our labs are researching inherited retinal diseases, but there’s no guaranteed government funding.
And if the funding stops, so does the research.
Research into inherited retinal disease is making quick progress, and the possibilities today are amazing. We’re seeing better diagnoses, and developing cutting-edge therapies to stop, and even reverse vision loss, and hopefully one day we can restore sight.
Please feel free to read more about our lab, and what we’re working on.
If Arato’s sight is stopped from deteriorating further, Arato can continue to compete in international tournaments and bring home gold medals for Australia. He won’t be looking at a future which could cost $5.2M just to live a full life. He will be looking at a future where he can thrive.
“It’s like I said to him, ‘it’s part of your identity but it’s up to you to define your own future as opposed to the disability defining who you are’.
“Arato is excelling at tennis because he’s in control, and he’s defining his life himself,” said dad, Tim.
The researchers will help kids that are living with the disability, and there's been a lot of progress, especially in the last few years.
Hopefully they'll be able to achieve cures or treatments for people living with disability, and show the world what is possible with science, and by helping others"
said Arato
Together, we can give the 1 in 20 kids facing a birth defect or genetic disease like Arato hope for a healthier, brighter future.
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