Hawaiian boy rides bike across America to raise awareness for rare diseases

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TWIN FALLS, Idaho (KMVT/KSVT) - Gabriel Low, 17, from Hilo, Hawaii is riding across America to raise awareness for rare diseases. He stopped in Twin Falls on Saturday.

"We're doing 3,000 miles from Seattle, Washington to Cleveland, Ohio," he said.

Gabriel said rare diseases really need attention.

"I think that's the real reason to ride and to raise awareness and to spread the message, that we want to start a conversation about rare diseases," he said.

He said rare diseases go under-acknowledged by the medical world.

"The reality is that many, many people do face these rare disease challenges and they don't get the right treatment because no one knows," he said.

Gabriel has a rare disease called Primary Periodic Paralysis, a genetic disorder that paralyzes a person randomly. He said it affects about 5,000 people in the United States.

"I was diagnosed young. I was diagnosed at six-years-old with this disease," he explained, adding that because he was diagnosed so young, he was able to get treatment and medication. He said he doesn't get paralyzed, but feels weak at times.

"I was riding my bike from Glenns Ferry to Hailey, I was riding along, riding along and all of a sudden I started to notice my legs felt weird," he said. He then took a break, ate some food and took medication. After 30 minutes he was back on his bike.

The disorder was passed down from his mom.

"She went misdiagnosed and undiagnosed for most of her life, until she was 30-years-old. She had this disease where she was paralyzed randomly," he said.

Gabriel said because of her, he was able to be diagnosed early.

"What this ride is really about is to help people to have more experiences like mine, with rare disease, where I have it, but it doesn't impede me in any way," he continued. "I know it's there, but I can live a normal life."

He said he originally planned this trip by himself, but received support from Strongbridge Biopharma, a company he said researches rare diseases.

Gabriel said he rides averages about 90 miles per day. He started his ride on June 11 and hopes to get to Cleveland by August for the USA Triathlon National Championships.

"It was after I had an episode, it kind of opened my mind that I have this," he said of his disease.

Gabriel said he was ready for the Lava Man Triathlon in Kona, Hawaii, but forgot to take his medication the morning before the race.

"As I went through the race, I felt weird, I kept feeling weird," he explained. He said adrenaline might have helped get him to the end.

After reaching the end, he said he collapsed and was taken to the medical tent where workers thought he needed either sodium, sugar or electrolytes.

"Both of those things, sugar and sodium, are bad for me. They're actually triggers for periodic paralysis and what I needed was potassium," he said.

So now he's making this ride across America to raise awareness.

"I know there are so many other people who are impacted so much work than I am, and because I've been so blessed to not be impacted, I want to use that to help others," he said.

His next stop is Salt Lake City. To track Gabriel in his process, visit the Ride For Rare Diseases website.



 
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