Hilo teen and triathlete Gabriel Low embarked on a cross-country cycling trip to raise money to increase research for and awareness of rare diseases.
It’s a cause important to Low, 17, and his family. The Waiakea High School grad has hypokalemic periodic paralysis, a rare muscular condition.
According to the U.S. National Library of Medicine’s Genetics Home Reference website, hypokalemic periodic paralysis causes episodes of extreme muscle weakness, often causing a temporary inability to move muscles in the arms and legs.
People with the disorder have reduced levels of potassium in their blood during such episodes. Hypokalemic period paralysis is estimated to affect 1 in 100,000 people, the site states.
Low’s mother, Emily, also has the disease.
Low said last month that he was inspired to do this campaign following his completion of the Lavaman Triathlon in March.
Before then, “I wasn’t really thinking about how I had this disease,” Low said. “Because I was active and because I took my medications regularly, I kind of forgot about it.”
He hadn’t experienced paralysis in years, but during the swimming portion of the Lavaman event, Low said he wasn’t feeling as strong as he usually did.
And when he started the cycling leg of the triathlon, he noticed again something wasn’t right.
“My legs hurt more than they usually did pushing on the pedals,” Low said. “I felt like I couldn’t get away from people like I usually could. Usually I could have sprinted away from people and got ahead of them. But this time something was wrong.”
In the excitement of the morning, he didn’t take his potassium and normal medications.
Low struggled on, “but it was more of a mental and physical challenge than I had ever faced before doing a race.”
After he crossed the finish line, he became paralyzed. It was the first time it had happened in years.
He was reminded that “I actually have this disease. I’m not normal like (I’ve been) pretending I was.”
Low also thought more about his mom, who was a national championship mountain biker at his age, but grappled with the disease more as she got older.
“So that was going through my mind,” Low said “As she got older, she got more affected. Is that going to happen to me? All these things are like ‘Wow. I have it,’ so what can I do? I want to, at least while I can, get involved in this. That’s when I decided I want to do something about it.”
Despite his struggle at Lavaman, Low finished well, placing 11th overall and qualified for the USA Triathlon age-group national championship in August in Cleveland.
“I thought, why not start a bike ride across the country and end up in Cleveland for the race and along the way … I want to do something that will impact people, do something that will help, and especially help rare diseases and that idea that I want to help promote.”
Low said he plans on giving presentations to different Rotary Clubs and organizations to “make people start talking about these rare diseases because the crazy thing is how many people are misdiagnosed and undiagnosed.”
He also was inspired by his mother, who cycled across the country when she was 18.
“She did it and she said it changed her life,” he said. “I want to do that, too, and I want to make a difference through doing that.”
He’ll be taking the Adventure Cycling’s northern tier route, which starts in Anacortes, Wash.
Low will document his trip on social media — Facebook, Instagram and YouTube — under Ride for Rare Diseases, and also has a website, www.rideforrarediseases.com.
“I’m so excited,” Low said about his journey. “I’m not that nervous. It’ll be hard, I think, at first. Right when I start, I have to go over the Rockies, which will be a little bit of a challenge, but I’m really just so excited to have that experience and meet all the people along the way. I think that will be a crazy, awesome experience. I’m excited for personal growth, as well as helping others grow. I think that’s one of my big goals.”
For Emily Low, emotions about her son’s ride are complicated.
“It’s very complex emotionally for me to see Gabriel plan this trip because of my own history with biking and periodic paralysis,” she said. “When I was his age, I was a nationally ranked mountain biker, but then I had to quit when I was 18 because sometimes my body would shut down. We didn’t know about periodic paralysis back then.”
She loved riding and didn’t want to stop, so she biked across the country herself.
“I just did it for fun. He is doing it for so much more and I am very proud of him for that,” she said. “I am proud that he is trying to raise awareness so that folks like us don’t have to suffer during years of pain, uncertainty, self-doubt and misdiagnosis.
“I am proud that he might be able to help fund research to look into how our rare condition, which is similar to some common conditions like migraine and epilepsy, works and how to better manage it.”
After the race in Cleveland, Gabriel Low said he will speak at the Periodic Paralysis Association international conference in Dublin, Ireland.
Through his ride, Low said he’ll promote donations to the organization because “they sponsor a lot of research into period paralysis.”
He also established a GoFundMe page to help with his personal expenses on the ride, called Ride for Rare Diseases. Low said he will donate all the money he doesn’t use to the PPA.
Email Stephanie Salmons at ssalmons@hawaiitribune-herald.com