Teen stops in Portland during cross-country bike ride raising awareness of rare diseases

Gabriel Low

A 17-year-old from Hawaii just started a 3,000-mile bike ride across the country.

One of his first stops is in Portland.

“The real inspiration, I have to say, came from my mother," Gabriel Low, the triathlete riding across the country, said.

Low is riding about 80 to 90 miles a day, with some rest days where he’ll swim and run for the next two months, and it’s all to bring awareness to rare diseases, one of which his mom has.

“For the first 30 years she went undiagnosed," Low explained.

It wasn't until his mom, Emily, was nearly 30 years old that she found out she had Primary Periodic Paralysis. It's an ultra-rare genetic disease. Low says there are only 5,000 people in the United States with the disease and about 1/100,000 are diagnosed with it worldwide.

During the most severe episodes, those with the disease can paralyze; It can be hard for them to blink and to breathe.

At 6 years old, after his mom was diagnosed, Low found out he had it, too. But he says he is lucky, because unlike his mom, he didn’t live with it for very long before doctors figured out what was happening.

"That diagnosis from a young age has helped me to get the correct treatment and have the knowledge that I have the disease and be really able to manage it and become an athlete and be able to be a normal person," Low said.

Low also credits his mom for his athletic talent.

"All of her efforts to help me grow up with the disease and not have to face the same challenges she did, that's what I want to dedicate this ride to, that's the inspiration I got,” Low said. “She pushed me to do things that she knew I could."

Low grew up playing team sports like soccer, but a few years ago, he fell in love with triathlons.

Because of the intense episodes, many with Primary Periodic Paralysis fear playing sports, but not Low. His dedication and determination to sport became clear during one of the most important races of his career.

"It was towards the second half of the triathlon, I realized that I’d forgotten to take my medication that morning,” Low said, explaining what happened during the Lavaman Triathalon. “As I was going, I started to feel my legs were harder to lift, and when I crossed the finish line, I collapsed.”

Low says that was the first time he’d had a serious attack in years, but nevertheless, he persisted.

"I still finished, and through that I was able to qualify for nationals and that was really cool," he said.

He says adrenaline got him through the race, and that experience also played a big role in his decision to trek across the country. The teen decided to bike from Seattle to Cleveland; That’s where the 2018 Age Group National Championships will be.

He’s hoping for big things there.

“The goal is for the world championships,” Low said.

But he’s also hoping to make a big impact on the way there. He wants to, “start a conversation and create a movement," centered around rare diseases.

Low says 1/10 people have a rare disease, and while that sounds common, the issue is there are roughly 7,000 rare diseases.

"Individually each of those diseases is so rare that doctors don't learn about them a lot in med school, and they're just not really acknowledged well,” Low said. “Out of the 7,000 rare diseases that there are, only 5 percent of them have treatment. That's crazy.”

Strongbridge Biopharma is now sponsoring him, helping make this last-minute summer decision a reality. "Strongbridge has given me a van and hotel rooms every night, and it's insane what has happened,” Low said.

He’s still in awe of how everything panned out, but is both humbled and excited to be a part of the ride and the movement.

Low would love if people joined him on his journey. If you're interested in riding with him on Thursday from Portland to Hood River, or on any other legs of the trek, check out his Facebook and Instagram pages, just search 'Ride for Rare Diseases.'

You can also check out his website, here, and his YouTube, here.

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