When Gabriel Gervasoni was born, he was so pale that the nuns at the old Catholic hospital in Ballarat thought "he must be an angel", his mother, Mandy, quips.
"He had this bright white hair," she says.
"People keep commenting, 'He's so alert, he's looking at everything'. I thought, 'his eyes are moving a lot', but I didn't have a lot of experience with babies."
Though hitting the expected milestones, as the weeks passed, Mandy began to notice that when Gabriel would look at people, "he was really only looking at the direction the sound was coming from".
The doctor tried to reassure her. He's just maturing late, they told her. "Some babies do that."
But Mandy "had an instinct". She was referred to a paediatrician for a second opinion — a decision that would herald a two-decade search for answers.
"It's stressful and frustrating not having answers."
Having spent much of his life in diagnostic purgatory, as Gabriel entered adulthood a question began to weigh on him.
It was obvious that "something was concerning him", Mandy says, and when Gabriel was about 18 years old, he asked his childhood ophthalmologist point-blank: "Am I going to go blind?"
'I want to memorise that while I've still got vision'
It's a difficult prospect to contemplate, but a path the duo have navigated once before.
After visiting the paediatrician all those years ago, Gabriel, still just a newborn, was referred to one of the top ophthalmologists in Victoria, who conducted a series of tests.
"They played lights, they're similar to strobe lights, as though you're in a nightclub," Mandy says.
"He didn't even wake up. He just sat there with his little head in the machine with me holding him up."
She was told that Gabriel had no light recognition, meaning he "couldn't tell if it was light or dark", and wouldn't be able to see
But as he grew older, something happened: he started to gain limited vision.
At six months, he turned his head towards a window, something he'd never done before. A year later, he started "being really hesitant".
"He'd be walking along, and then all of a sudden he'd go, 'Oh'," Mandy says.
Though life through Gabriel's lens is "very blurry", his photo reel is a treasure trove of memories, and a celebration of the everyday.
There's the duck he saw in the park one morning, and the "huge cat" that walked past him.
The official term for his "current diagnosis" is an ill-defined form of retinal dystrophy.
In layman's terms, it means Gabriel's vision will "gradually go away" and he'll be "completely blind" by the time he's 40.
But while Gabriel found himself in "complete shock by the 180 (degree change)" in his development, it would ultimately only further fuel his passion to help "others with a disability to lead fulfilling lives".
'Nothing can stop him'
More than 575,000 Australians are blind or vision impaired.
And as a young person with a disability, Gabriel knows all too well the extra hurdles employment, education and even social activities can bring.
"I realised when I was young, being vision impaired, I wouldn't have as many opportunities as someone with full vision," he says.
"So I decided that I'll do as much as I can to support the community and to raise awareness for people with vision impairment and disabilities in general."
Determined to be a voice for those often left out of the conversation, he joined the City of Ballarat's Youth Council and the Central Highlands Youth Advisory Board to ensure the needs of young people were being heard.
"He's become a fantastic role model for many of our other youth volunteers because nothing can stop him," says Katja Fiedler, a youth development officer with the City of Ballarat.
"On some of our leadership camps, we've gone out bush and done kayaking or we're jumping off things, and Gabe's always the first to put his hand up to do something he's never done before."
The youth council brings together young people from a variety of cultural backgrounds, experiences and abilities, who "provide insights that we might not get from internal discussions or consultations within council", Katja says.
Through his lived experience, Gabriel has helped shape the city's health and wellbeing plan, and provided important input into local master plans and redevelopment projects.
"It's really, really important to get his insights as a young person who's visually impaired, especially when it comes to accessibility but also refurbishing," Katja says.
Accessibility challenges are often something people don't consider, echoes Mandy, who has seen Gabriel go through a "really big orientation process".
His reduced field of vision means "all of his peripheral vision is gone" — something they "couldn't plan for".
But for Mandy — who has watched her son not just adapt to life's challenges, but grow as a person — there was never any question over whether his diagnosis would quell his passion.
"We all have challenges to face and this was his challenge," she says.
"He's pretty exceptional. I know that every mother says that, but he really is," she laughs.
'Embrace accessibility as a priority'
Evidently, it's not just his mum who thinks so.
Gabriel was named Ballarat's Young Citizen of the Year for 2021, with judges pointing to his "determination to contribute to the Ballarat community" and passion about "issues affecting youth and those with disabilities".
While those living with a disability face barriers across the board, regional communities must navigate unique challenges, including significantly reduced access to options and choices about services to support their needs.
Gabriel wants to use his platform to ensure decision-makers "embrace accessibility as a priority and to ensure that there are no barriers to people with disability being part of our community".
It's a belief shared by Sally Aurisch, CEO of Blind Citizens Australia, the national representative organisation of people who are blind or vision impaired.
While "accessibility on a spectrum is not too bad" in Australia, she says, "we do still have our fair share of challenges".
"A story I heard recently from someone was that they lived in a very small town with one bus driver, it was a very long trip, so it was hard to gauge, and that driver didn't mention to this person when their stop was approaching," she says.
"But this person never felt confident to provide feedback to this to the service provider because they were the only blind person in town, so it was going to be very easy to identify who they were."
It's why ensuring those who live with a disability have a seat at the table is so important, she says.
"I think that disability and life experience, in general, affects us all differently, our needs are quite unique and diverse," she says.
"And so by bringing together a variety of voices, when we design services and programs, we can make sure that they meet that diverse group of needs."
'I want to imprint everything that I see'
Soft-spoken and humble, Gabriel hesitates to speak about his achievements.
Thankfully, that's what mums are for.
"We put in a cabinet to put his awards in and now he's taken up the whole thing," Mandy laughs. "He can't win any more awards because I can't fit them in.
As she watches her son continue to "exceed the expectations", as he has in the face of all of life's hurdles, Mandy has high hopes for her regional community.
She longs for the day when there are no barriers to employment, education and social activities; when Gabriel can be "just another face in the crowd".
"Without there needing to be special adaptations, because those adaptations are automatically built-in," she says.
"I just hope that he feels able to do whatever he wants to do; that whatever his dreams and his passion is in life, that he can do that."
As Gabriel's diagnosis stands, he has another 20 years of sight — and he's determined to make the most of it.
You'll find the 21-year-old walking around town "looking at everything" in his path.
"People who can see might walk past certain things without really noticing it, because they've probably walked past it a million times and will pass it another million times," he says.
"But for me, I walk past it and I don't know if it's going to be the last time I see it or not. I want to imprint everything that I see so I can appreciate it."
The ABC's Heywire competition is open to all regional Australians aged between 16 and 22.
The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to "tell it like it is".
If you are aged between 16 and 22 and would like to find out more about the ABC Heywire Competition, go to the ABC Heywire website.
Source: ABC