Paralympian Jenna Jones opens up about condition that could one day leave her blind

Jenna Jones always knew her place was in the pool, and she isn’t going to let an unforgiving eye condition get in the way of her Commonwealth Games debut.

For most people, sitting close to the TV and struggling to see the whiteboard from a distance are symptoms of short-sightedness, a common eye condition usually corrected with a pair of 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 can still recall the appointment with her eye specialist that concluded with the unwelcome news.

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“The specialist told us, ‘she could go blind any day’. I just couldn’t take it in,” she said. Jenna was only six years old at the time of 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 her with Cone-Rod Dystrophy, a condition that attacks the retina’s light sensitive cells, also known as cones and rods, and affects one-in-4000 people.

Similar to Jenna’s experience, symptoms of this condition usually include decreased sharpness of vision, colour-vision problems and light sensitivity.

As the condition progresses, patients notice blind spots in the middle of their visual field, partial loss of peripheral vision and have trouble seeing fine details.

According to the Genetic and Rare Diseases Information Centre (GARD), most patients with the condition are legally blind by adulthood.

Jenna Jones will make her Commonwealth Games debut in Birmingham. Picture: Nigel Hallett

Jenna is one of six children and admits that at the time of her diagnosis, she questioned why she was the only one that inherited the condition.

“You think to yourself, ‘Why has this happened to me? I am one of six kids – why am I different from my siblings?’” she said.

But despite her initial heartbreak, she was relieved to find out the cause behind her deteriorating vision.

“As long as I can remember I‘ve always said I can’t change it and that’s basically been my mindset for my whole life,” Jenna told news.com.au.

“I am the first person to make fun of myself being blind. I will always be the one making blind jokes. I’ll always be the one like being silly about it and I embrace it.”

After Jenna was diagnosed, her parents encouraged her to try out a variation 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 was going to happen with my vision,” she said.

“Swimming and athletics were the two sports that really stuck and then eventually I just went with swimming because it … was the safer option at the time. I kept tripping over on the athletic field and rolling my ankles.”

Jenna’s passion for the pool helped her through some difficult times, particularly when she was young.

“It‘s given a purpose. It’s a silly thing to think as a child but when you have a disability or you’re different to your peers you feel like you have nothing but … swimming was that one thing for me where I could really connect with people,” she said.
The young athlete’s talent took her to the world stage. She competed at the Pan Pacific Games and World Championships, before qualifying for the 2016 Rio Paralympic Games when she was 15.

But it wasn’t all triumph. Jenna’s early swimming career was tainted with sickness and injury and outside the pool, she was confronted by school bullies.

“I used to have this big camera that zoomed in on the whiteboard and … it‘s just embarrassing to have I guess, even though I knew it would help me but you never want to be different to anybody else.”

Jenna Jones was diagnosed with a degenerative vision impairment when she was six years old. Picture: Instagram/jennax0x

She also recounted the anxiety she felt when she struggled to find her friends in the playground.

“As a child you just don’t want to be different … and (children) can be mean if they don‘t know or understand what you’re doing,” she said.

Jenna wrapped up her High School Certificate (HSC) at TAFE before she made 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 for me to move states for that matter, but I don’t think I have ever been so confident in a decision for myself,” she said.

The athlete said she has met like-minded people and now trains with a team of 12 para-athletes.

Jenna will be joining nine of her teammates at this year’s Birmingham Commonwealth Games and will compete in the inaugural vision-impaired races.

One main technique Jenna uses in the pool includes counting strokes, which helps build her awareness of how far away she is from the walls of the pool.

Other methods vision impaired swimmers use include sticking to the lane rope, following the line at the bottom of the pool or having a tapper, which is an official or coach that taps the swimmer on the head or back with a long stick, usually homemade, to notify them of when they need to flip away from the wall.

Jenna is thrilled to be part of history as she represents Australia in the first vision-impaired race of its kind at the Commonwealth Games.

“The first one always gets referenced, it‘s insane to think that in years to come we will be known as the first ones to compete in such a race,” she said. “It’s crazy, I can’t wrap my head around it.”

As for her future hopes and dreams, Jenna said she’s working towards making the team for the 2024 Paris Paralympics.

“(After these games) I just want to focus on the little things to improve the bigger picture, but mostly just trying to get on the team again is my biggest goal.”

Jenna is an ambassador for Jeans for Genes Day, the main fundraiser for Children’s Medical Research Institute, is next Friday 5th August. Donate jeansforgenes.org.au.