Drass Jordan of Keaau is a typical 9-year-old boy who loves soccer, archery, hip-hop, and hanging out with his three sisters and baby brother. But at the age of 2, Drass was diagnosed with type 1 diabetes, an autoimmune disease where a person’s pancreas stops producing insulin.
“We didn’t have any experience with type 1 diabetes,” his mother, Dana Hernandez, told the Tribune-Herald. “This is a 24/7 thing, he’s got a pump connected to him, a (continuous glucose monitoring device) connected to him, and he has to think about his diabetes every time he puts something in his mouth to eat. It’s an all-the-time thing.”
Drass found inspiration in the diagnosis, though, and this year, he was selected out of nearly 1,000 applicants to attend the biannual Juvenile Diabetes Research Foundation’s Children’s Congress in Washington, D.C., where he will represent Hawaii.
“It was a big surprise, and he was very excited about it,” said Hernandez, who will be traveling with him. “They even let us come early because we’re all the way in Hawaii, but there’s families from all over participating, and it’s going to be pretty cool.”
Drass was excited when the acceptance letter arrived in the mail, and he’s looking forward to meeting the other student representatives.
“I’ve never been to Washington, D.C., before,” he told the Tribune-Herald.
The honor was well-earned, with the application requiring him to make a video and complete several other projects beforehand.
“He had to make three scrapbooks for the senators and representatives, then he had to write letters, and they want him to do some more social media challenges coming up,” Hernandez said. “We can’t wait until we get to Washington and then we can kind of relax a little. It’s been a lot, but it’s been good.”
Drass also is excited to share his story in the hope of increasing access to medical supplies so other people with type 1 diabetes can receive the same care he does.
“The whole point is to make JDRF get more money so they can do more stuff with diabetes, and also so that we can make insulin more affordable, and CGMs and pumps,” he said.
Drass doesn’t view his type 1 diabetes as a negative. Instead, it has led to new friends and experiences, like a family camp that they attend each year in California for kids with diabetes.
“The good things is that I get to go to diabetes camp where we play soccer, four square, and we go swimming, and do a bunch of stuff, and going to Washington and stuff like that,” he said. “But the bad things is I can’t have my cupcake when I’m running high (glucose levels), and sometimes I wish I could just eat a Pop-Tart right there at school.”
Other challenges are explaining his type 1 diabetes to friends.
“It’s hard to explain sometimes,” he said, especially when he has to sit out during soccer. “It’s a little too complex for them, maybe in fifth grade it’ll be a little easier.”
Drass also has participated in several clinical trials where he tests out new equipment like fast-acting insulin and Omnipods, which provide nonstop insulin delivery through a tubeless, waterproof insulin pump.
“My approach was immersion, just do everything we can that involves diabetes so that it becomes everyday,” Hernandez said. “When he was first diagnosed, he lost weight because he wouldn’t eat, because he knew if he was going to eat he’d have to get a shot, so it was really difficult. He was probably three when we did our first study, and he’s done maybe five or six of them.”
The clinical trials are beneficial for testing out the latest technology, which can make living with type 1 diabetes a little bit easier.
“It’s more about being able to try the new technologies because you can only get a new insulin pump every four years through insurance,” she said. “Another was for fast-acting insulin. Right now, it takes about 15 minutes for his insulin to work, so he has to know what he’s going to eat, give himself insulin, then wait 15 minutes before he eats it.”
But even with type 1 diabetes, Drass stays active, especially on the soccer field.
“I’ve been playing for three seasons,” he said. “And have three trophies.”
Email Grant Phillips at gphillips@hawaiitribune-herald.com.