For most people, sitting close to the TV and struggling to see the board from a distance are symptoms of myopia, a common eye condition that is usually corrected with glasses.
But for a young Jenna Jones, these were signs of an incurable genetic eye disease that specs alone wouldn’t fix, sealing her fate that, without a cure, she would one day lose her sight.
The 21-year-old still remembers the appointment with her eye doctor that ended with the unwanted news.
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“The specialist told us, ‘I could go blind any day.’ I just couldn’t accept it,” she said. Jenna was only six at the time of the diagnosis.
With the cause of her condition unknown, Jenna was referred to geneticist Professor Robyn Jamieson at the Children’s Medical Research Institute in western Sydney.
Professor Jamieson diagnosed him with rod and cone dystrophy, a condition that attacks the light-sensitive cells in the retina, also known as rods and cones, and affects one in 4,000 people.
Similar to Jenna’s experience, symptoms of this condition often include decreased visual acuity, color vision problems, and sensitivity to light.
As the disease progresses, patients notice blind spots in the middle of their visual field, partial loss of peripheral vision, and have trouble seeing details.
According to the Center for Information on Genetic and Rare Diseases (GARD), most patients with this disease are legally blind by adulthood.
Jenna is one of six children and admits that at the time of her diagnosis, she wondered why she was the only one to inherit the disease.
“You think to yourself, ‘Why did this happen to me?’ I’m one of six children, why am I different from my siblings?’” he said.
But despite her initial heartbreak, she was relieved to discover the cause behind her deteriorating vision.
“For as long as I can remember, I’ve always said I can’t change it and that’s basically been my mindset my whole life,” Jenna told news.com.au.
“I’m the first person to make fun of being blind. I will always be the one making blind jokes. I’ll always be the one who likes to be silly about it and I accept that.”
After Jenna was diagnosed, her parents encouraged her to try a variety of sports to take her mind off things.
“They wanted me to experience everything I could because the doctors had no idea when I would go blind or if I would go blind. They didn’t know what would happen to my vision,” she said.
“Swimming and athletics were the two sports that stuck, and eventually I went to swimming because … it was the safest option at the time. I kept stumbling around the athletics field and rolling the ankles.”
Jenna’s passion for the pool got her through some tough times, especially when she was young.
“It has been given a purpose. It’s a silly thing to think as a kid, but when you have a disability or you’re different from your peers, you feel like you have nothing but … swimming was that thing for me where I could really connect with people,” he said. The The young athlete’s talent took her to the world stage, competing at the Pan Pacific Games and World Championships, before qualifying for the Rio 2016 Paralympic Games as a 15-year-old.
But not everything was a triumph. Jenna’s early swimming career was tainted with illness and injury and outside the pool, she faced school bullies.
“I used to have this big camera that would come up to the whiteboard and … I guess it’s embarrassing, even though I knew it would help me, but you never want to be different from anyone else.”
He also described the anxiety he felt as he struggled to find his friends in the playground.
“As a kid, you just don’t want to be different … and (kids) can be mean if they don’t know or understand what you’re doing,” he said.
Jenna completed her High School Certificate (HSC) at TAFE before making the life-changing decision to move interstate to the Sunshine Coast.
“As hard as it was to leave my family and my parents (who) were so nervous about me transferring out of state, I don’t think I’ve ever been so confident in a decision for myself,” she said.
The athlete said he has met like-minded people and is now training with a team of 12 para-athletes.
Jenna will join nine of her teammates at this year’s Birmingham Commonwealth Games and compete in the inaugural visually impaired races.
A main technique Jenna uses in the pool involves counting strokes, which helps her become aware of how far she is from the pool walls.
Other methods used by visually impaired swimmers include clinging to the lane rope, following the line at the bottom of the pool, or having a tapper, which is an official or coach who hits the swimmer on the head or back with a stick long, usually homemade. to warn them when they should move away from the wall.
Jenna is delighted to be a part of history as she represents Australia in the first visually impaired race of its kind at the Commonwealth Games.
“The first is always referenced, it’s crazy to think that in the next few years we’ll be known as the first to compete in a race like that,” he said. “It’s crazy, I can’t wrap my head around it.”
As for her future hopes and dreams, Jenna said she is working to make the Paris 2024 Paralympic Games team.
“(After these games) I just want to focus on the little things to improve the big picture, but mostly trying to get back into the team is my big goal.”