Olivia Depares is a whip smart and capable young woman determined to live her life on her own terms and break down barriers for others with Usher syndrome.

A lawyer specialising in immigration law and a career in government, she’s also a keen boxer.

“I think sports is so fundamental for us all – to be physically active and social builds confidence and friendships,” she says.

Olivia was born with Usher syndrome 1B – a rare inherited genetic condition that causes profound hearing loss, a progressive decline in vision from teen to adult years and balance problems.

“It’s only through living with the condition that you can truly understand how it affects all aspects of your life,” she says.

Scientific breakthroughs have helped her keep her hearing and achieve her goals, and she is doing everything she can to advocate for research into vision loss.

Journey to diagnosis

When Olivia was only a few weeks old, her mother Jenny was suspicious that her daughter could not hear.

“Despite several visits to our then GP, these concerns were initially dismissed, but with the insistence of my mum, a referral to an ear, nose and throat specialist confirmed my profound hearing loss,” says Olivia.

Olivia was fitted with powerful hearing aids at 11 months, but they were not enough for her to hear speech clearly. The only way she could hear speech was through a multi-channel cochlear implant.

Independently developed and commercialised in Australia, the multi-channel cochlear implant has transformed the lives of people with Usher syndrome as well as the lives of millions of people worldwide, enabling them to hear.

After months of auditory therapy, Olivia received a cochlear implant first in her right ear when she was 11 months of age, and in her left ear at nine years old.

“My cochlear implants have been crucial for me to learn to hear and then speak,” Olivia says.

“They are certainly a part of me.”

“They have given me the ability to pursue my goals and passions which would have no doubt been a lot harder to achieve had my parents not decided to proceed with cochlear implantation.

“Now I feel that it is my duty to do what I can to raise awareness, raise understanding, raise funds and raise hope, to give those living with eye disease the chance to improve their future.”

But without research, people like Olivia with Usher syndrome will continue to lose their sight.

This loss of sight associated with Usher syndrome is caused by an inherited retinal disease (IRD) called retinitis pigmentosa (RP) – which is the degeneration of photoreceptor cells in the retina.

Children typically experience a gradual loss of their peripheral vision between 10 and 15 years. Then, as a young adult – from their mid-20s to early 30s – they progress towards becoming legally blind.

Olivia’s field of vision is currently 10 degrees instead of the usual 180 degrees.

“I have no peripheral vision, and my sight is deteriorating slowly,” says Olivia.

As a toddler Olivia’s balance was also an issue, and at the age of four she showed the initial signs of night blindness.

“I was late to walk and had lots of therapy to encourage my gross motor skills,”
says Olivia.

“Mum also describes me freezing up when I found myself in a dark room or hallway.

“It was at this time that I was diagnosed with RP, the missing link completing the Usher syndrome diagnosis.”

On her own terms

Olivia aspires to build on her already impressive achievements.

“I completed my secondary education in 2015 and then went on to complete
a Bachelor of Laws and Arts (Communications) at Macquarie University.

“In 2021, I was admitted as a lawyer and spent some time working in immigration law before moving to my current role in government which has a focus on legislative amendments and policy reform.

“Away from work, I love to exercise with a regular combination of boxing and strength training as well as walking. I have also recently become involved in my partner’s food truck business, which has been lots of fun, and hard work – venturing out on the weekends to regional NSW and Sydney surrounds.”

Olivia’s passion for advancing the health and rights of people with disabilities could one day also lead to her taking on an advocacy role: “I would love to move into the social justice field with a focus on disability policy and reform in the future,” she says.

Future impact

There is currently no cure for Usher syndrome, but CERA’s work into emerging gene therapies is giving Olivia hope.

“Comprehending and acknowledging the struggles people have with deaf-blind conditions is a step towards recognising the enormous importance of CERA’s research into Usher syndrome.

“My hope is that by sharing my story, other people with Usher syndrome can have the confidence to be able to live a life without further limitations and like me can continue living independently and contribute to society to their full ability.

“I hope people consider this and donate what they can towards this worthwhile research. It is research that can have a life changing impact.”