Feb. 5, 2014— -- Canadian Brett Devloo, 18, was living life as a typical teenager. He had just earned his learner's permit and spent most of his free time hanging out with friends and skateboarding.
But everything came to a halt one day nearly two years ago. In the middle of history class, he noticed his vision had become blurry and he could no longer read the words on the overhead projector.
Devloo said he went to see the eye doctor and what he thought would be a small shift in his prescription turned into a drastic change. Devloo's vision had gone from 20/50 to 20/500, and he was showing symptoms of profound visual impairment.
"I saw like five specialists in seven days, doing a bunch of different tests like blood work, MRIs, seeing neurologists, optometrists, ophthalmologists, just general surgeons…none of them knew what was going on," Devloo said.
"It was completely random and unexpected, and I went blind in a week."
Over the course of six months, the tests continued, and Devloo's vision continued to get worse, he said. Finally, Devloo was diagnosed with Leber's Hereditary Optic Neuropathy, or LHON, a rare progressive disease that leads to loss of central vision. It affects approximately one in 50,000 people.
"Very often the ophthalmologist who first sees the patient has never seen a case of Leber's and doesn't recognize it, and maybe hasn't even heard of it. And the neurologist almost certainly hasn't heard of it," said Dr. Alfredo Sadun, one of the leading researchers on LHON.
LHON is genetically passed down from a mother to her children and primarily affects young adult males. There is no cure for LHON, but doctors are researching treatments that if started early can arrest the progress of the disease.
Jeremy Poincenot, 24, is one of the lucky ones. In the fall of 2008, Poincenot was a college sophomore when he began to see the world very differently.
He went to the optometrist and noticed that he couldn't see anything out of his right eye. Poincenot was given a prescription for medication that doctors hoped would restore his vision in his eye before a follow-up appointment.
"Instead of the one eye that was affected getting better, after a couple of weeks, suddenly the other eye started very quickly getting worse," said Lissa Poincenot, Jeremy's mother.
She searched tirelessly for answers, scouring the Internet and came across LHON. Thanks to his mother, Poincenot was diagnosed quickly and able to start treatment early.
"Once we got through all the urgent things, then we got to, How do we get his life normal again? And for Jeremy, normal equals sports," Lisa Poincenot said. Jeremy Poincenot’s mother encouraged him to return to a sport he loved – golf.
"I kind of laughed at her and thought she was joking. I said, 'Mom, when do blind people play golf, at midnight?' I didn't think that was a possibility," Jeremy Poincenot said.
With the help of his father, Lionel Poincenot, who served as his guide, Jeremy Poincenot started playing golf again. And in 2010, they wound up in England at the World Blind Golf Championship.
"I hit the shot, came off the club perfectly. I hear just a little dink, you know, something. That's kind of weird. I look to my dad, my dad is on my right. He said, 'It went in.' I was like, 'Holy crap!' Everything after that ... was a blur," Jeremy Poincenot said.
Poincenot had won the championship.
Devloo, like Poincenot, has refused to let the disease knock him down. He said one of the first things he wanted to do after hearing the diagnosis was get back to skateboarding.
"When I got on my board for the first time after being blind, I felt really timid skating ... I went slow, but it still felt unbelievable to still be able to be on my board, and know that I'm not going to let being blind stop me from doing what I love to do," Devloo said.