South Bay high school wrestler battles rare condition taking his eyesight
SAN JOSE -- A South Bay teenager who loves to wrestle has found himself in a fight against an ongoing medical challenge that is rapidly taking away his vision.
Getting homework done at the table on a school night is a routine challenge for most juniors in high school, including Bryan Blair. However, his regular appointments with his textbooks are growing tougher by the day.
"I don't know if you noticed, but when I first open the textbook, I have to get about this close so I can see the numbers and letters," he said. "The font gets much smaller. So I usually take pictures on my phone and I can blow it up like that."
Bryan's vision is rapidly deteriorating as a result of an extremely rare condition called Leber Hereditary Optic Neuropathy (LHON), or Leber's Disease. He's legally blind in his right eye, which is at 20/400. His left one isn't far behind, now at 20/100.
"20/200 is legally blind," he said.
Bryan perceives light, but says everything is extremely blurry.
"Overcoming just the small things of not being able to do certain big things anymore is really challenging and off-putting at times," he said.
The first half of his junior year at Leigh High School, life was normal. Bryan was a strong student and standout wrestler.
"My entire life up until January 1, 2023 – I had 20/20 vision, was doing very well in athletics, doing very well in school," Bryan said.
But his life changed at the start of 2023. He went to bed on New Year's Eve and woke up in the middle of the night with a blistering migraine and blurry vision. Considering the fact that he'd experienced migraines before, he didn't think much of it an eventually fell back asleep.
When he woke up, his family went on a hike as they typically do on New Year's Day. On the drive there, he noticed his vision was still blurry. That's when he started to get anxious. He figured it would resolve, but it didn't.
"The doctors said that out of all of the cases they've seen with my disease, I'm the fastest degenerating one," he said.
Wrestling has been a major part of Bryan's life for many years. He still competed for a large part of the season, despite having difficulty seeing.
"I'd go and win my match or just give my heart out. And I'd come off the mat and my coaches and my parents would say, 'How are you feeling?' I would just say, 'I can't see,'" he said. "My vision would become very blurry to the point where I couldn't see. It was so blurry that I was really going off of feel at that point – and muscle memory."
He still was able to qualify for the post-season, but he had to bow out.
"I was in and out of hospitals and appointments and doctors and testing – all of this stuff," he said.
It took a while to figure out his diagnosis.
"MRI's, blood testing, scans, x-rays, the cheek swab – the genetic test – is what helped them get the diagnosis," Bryan said.
But despite the hand he's been dealt, Bryan is staying positive.
"Everything that I truly put my energy and my mind into, I do it 100%, and I do it to the best of my ability," he said. "That mindset has helped me a lot with this very unfortunate condition that I have currently."
His parents, David and Losana, echoed that point.
"Bryan has done a fantastic job about that. I couldn't be prouder of him," said his father, David.
At this point, his parents are pushing to get Bryan into clinical trials.
"There is no approved treatment for Bryan's condition at present. But on the horizon, there is a potential cure that is promising. So we hope to be able to be involved in a trial with that," David said. "There is good and legitimate cause for hope. It's just difficult because the typical prognosis is blindness in both eyes."
Losana says they are holding on to hope, and a belief in science.
"Other than that, what else are we going to do? Let the disease run its course, or take a gamble on science?" she asked. "It's going to be hard. We all know it's going to be hard. But we're trying to be strong."
Bryan feels confident in the approach he and his family are taking.
"There's little that we can do, and we don't have a ton of control over this situation – and that's just a fact," he said. "But the things that we can control, we're doing them. That's part of it. Going out to trials and pushing and looking at the most developed and latest research, Everything that we can do, we are doing."
Leber's Disease affects one in 50,000 people, according to data from the Cleveland Clinic. Men are affected more often than women, and symptom onset typically occurs between 15 and 35 years old. Although the disease is hereditary, there is no known history in Bryan's case.
"When people are more aware about something, more attention gets drawn to it, maybe more money, and just more people are working to find a cure," his father said. "The more people that know, it can't hurt anybody."
An online fundraiser has been set up for Bryan's family. If there is money left over that doesn't go towards Bryan, David says he'd like to donate it in the effort of furthering LHON research.
Learn more about Leber Hereditary Optic Neuropathy (LHON) here.
