A bodybuilder who beat the odds after a simple cold turned into deadly organ failure has now suffered another blow as a genetic eye disease has stolen his sight – and there’s no cure.
Jared Maynard used to be one of the fittest men alive.
The dad-of-three was an avid bodybuilder, regularly training six times a week.
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And it’s thanks to this that his life wasn’t on the line when a simple cold turned into a severe inflammatory syndrome, which led to delirium and organ failure.
Despite pulling through, much to doctors’ surprise, he wasn’t out of the woods yet.
Now, he’s been registered legally blind after being diagnosed with a rare genetic eye disease that is causing rapid vision loss.
“I thought being on end-of-life care would be the last battle I had to face,” the personal trainer told Need To Know.
“But the next one I literally couldn’t see coming.
“It started off with night blindness.
“Then my peripheral vision was eaten away until only a narrow tunnel was left.
“Now, it’s only a matter of time until my central vision goes, too.
“Worst of all, there’s no cure or treatment.”
The disease, choroideremia, affects just one in every 100,000 people, according to a study on the National Library of Medicine.
Jared, from Ontario, Canada, recalls suffering night blindness as a child and at age 17, he was told that he wasn’t legally able to drive.
While he was aware of the condition and his diagnosis with it, he was allegedly told that it wouldn’t begin to impact him until his late 50s or 60s.
But his battle with the aforementioned inflammatory syndrome, hemophagocytic lymphohistiocytosis (HLH) accelerated this decline.
He said: “I thought I had time.
“But everything declined faster than anybody expected.
“At 33, I suddenly couldn’t see my own computer screen.
“Not long after, my eye doctor said the words I was dreading out loud: ‘You’re legally blind’.
“I’m only 34.
“I survived the disease that was supposed to kill me, only to find out that while I cheated death, I was blindsided in the process.”
Jared purchased a white cane to help him get around and warn people of his vision impairment.
It took a while for him to get used to it, though.
He said: “I was so scared of the noise it made that I barely touched it to the ground.
“Then I tripped over a bench I couldn’t see and went down in the middle of a packed airport.
“I wasn’t just the blind guy anymore.
“I was the blind guy that face-planted in front of everyone.
“It was humiliating.”
The signs his vision was compromised came just five months after recovering from his near-death battle in 2023.
Although he’s still learning to adapt to his new normal, he’s not letting it break him.
He added: “I’m still working and coaching.
“I have a very narrow window of central vision and I can catch a few words at a time.
“There’s often double vision and it gets worse when I’m tired.
“Day-to-day, it takes assistive technology to function, screen readers and zooming in on everything.
“I’m adapting and learning all the time.
“A lot of that work is on my mindset: letting myself be seen, being okay with making mistakes, learning brand new ways to navigate the world, and refusing to let my world shrink.
“What keeps me in it is love.
“Love for myself, for my family, and the determination to see my mission through despite all the inaccessibility and the challenges that come with going blind.
“I’m in the process of getting a guide dog to help with that, though that comes with its own hurdles, too.
“I’m still training heavily. I’m still coaching. And I want to be back on a competition platform before the end of this year.
“Everything I do now runs on four words: you’re not done yet.
“That isn’t a promise that everything goes back to how it was. Some things don’t. Some scars stay.
“But ‘done’ is only when you stop trying to become the person you want to be – and I’m nowhere near that.”
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