Langley resident Brett Devloo remembers everything about the day he lost his vision, even though it’s been 12 years since the fateful day.
“It was Nov. 23, 2011. I will never forget the day,” he said. “I had no idea what was going to happen.”
He was 16 and listening to his history teacher in class when suddenly he could no longer read the overhead projector.
At first, he thought the projector was out of focus, but after the room’s lights were turned back on and he still couldn’t see, Devloo realized something else was amiss.
He went to the eye doctor that day, and what he thought would be a slight change in his prescription revealed his vision had actually gone from 20/50 down to 20/500 (on a scale of 20/20) in a matter of seconds, and he had symptoms of profound visual impairment.
Devloo said the days after blurred together, but he remembers being in a state of shock as his days filled up with specialists appointments and tests, all the while learning to adapt to his new life.
“I was directed to different specialists and neurologists, and everything was just an elimination game at that point,” he recalled.
Eventually, Devloo, who is from Manitoba, was tested positive for LHON – Leber hereditary optic neuropath, a rare mitochondrial disorder due to a gene mutation passed down on the maternal side.
“There are four strains of the DNA mutation I got diagnosed with… and one of them you can spontaneously get your vision back,” explained the now 28-year-old. “But mine is the most rare version that does not happen to.”
While there is no cure, doctors are currently researching treatment options.
LHON Canada, a national patient support group, estimates there are about 35,000 people worldwide with LHON, but thousands more carry the genetic mutation and could lose their vision at any time. While it can happen at any age, it most often affects men between the ages 15 and 25.
It took more than six months for Devloo to receive his diagnosis and the news that he would be blind for the rest of his life. He lost his newly acquired driver’s license, his job, and had to give up his car not long after losing his vision.
“There was a lot of shock… but I had to roll with the punches, I had no choice,” Devloo shared. “I almost didn’t have a chance to cope with it, I just had to run with it and keep going.”
He recalled his school administration and teachers being a big support for him as he finished high school, which helped Devloo graduate on time – a blessing he calls it.
“They had a lady with the education board of disabilities come in two or three times a week to basically teach me how to be blind. She taught me some mobility skills with my cane, Braille, and gave me the opportunity to try things on the computer,” he shared.
Devloo’s vision is not entirely black, he can see contrast – light and shadows – so he couldn’t tell where the doors were at school.
“The school painted the doors a darker colour so I could use them… They built new handrails on the stairs that go from one door all the way to the next. The school was really helpful.”
After high school, he started a clothing brand which he uses to raise funds to donate iPads to other visually impaired youth.
“All iPads come with accessibility software called VoiceOver that lets you navigate by sound… it’s a relatively affordable way to equip students with an effective way to learn and stay connected with the world around them,” Devloo explained.
In 2022, Devloo also had the opportunity to record music with one of Stevie Wonder’s producers, which took him to Los Angeles to work on the album.
“I make a lot of winks and nods to being blind in almost every song,” he chuckled.
He moved to Aldergrove in Langley about three years ago, and said people can often find him at the local skateboard parks.
One of the ways he’s learned to skateboard blind is placing thick black tape or black spray paint in certain spots to let him know when he needs to slow down, stop, or turn.
“Any kind of visual marker that is contrast to the ground, I put there… and if you see black lines at a skate park or black tape, don’t take it off – that means I was there and I’m coming back,” Devloo laughed.
Devloo is also available for motivational talks at high schools, and currently has two booked in Mission this month.
“I’m looking for more places to do more speeches and share my story. I can provide a skateboard demo, a speech, and a small musical performance if they want,” he said.
“Kids need to know that they can be something too.”
His website is relaunching in May as well, which will have a section where folks can donate to help raise funds to go towards the iPads for other visually impaired kids, and he’s working on arranging fundraisers as well.
“I would love to help students with more than that, like get laptops and [other] accessible technology that can be useful and help them do something creative with it or something that makes them feel good with what they have and be able to feel a bit of normalness.”
Those interested can connect with Devloo at theblindkidtbk.com.
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