Talking diabetes with a kid’s charm

Curtis Jones and Ella Ludwig enjoy high-energy days like most kids their age do, whether it’s mountain biking for him or dancing for her.

But these friends also regularly check devices they wear for monitoring blood sugar levels because of Type 1 diabetes. Both talk with ease about what it means to have the disease, which helps, because this year they’re Spokane-area ambassadors for the Junior Diabetes Research Foundation.

Ella, 12, is ambassador for JDRF Community One Walk on Sept. 22 at Riverfront Park. With a walk fundraiser kick-off June 15, she’ll speak at events and visit businesses providing donations. Curtis, 13, will go to Washington, D.C., in July to talk to members of Congress as part of the biennial JDRF Children’s Congress. He’ll be one of more than 160 youth with Type 1 diabetes there to talk about life with the disease and the need for research.

“I’m trying to do what I can to help,” Curtis said. “I like teaching people about what diabetes is. Some people don’t understand or they’re not aware.”

Type 1, previously called juvenile diabetes, occurs when the body’s immune system destroys insulin-producing cells in the pancreas so the body produces little or no insulin, a hormone that enables blood sugar to enter the cells in the body where it can be used for energy.

Having the disease requires regularly monitoring blood sugar levels. Continuously high levels can lead to severe health issues, such as kidney failure. When levels plummet, patients can feel dizzy or confused, or even lose consciousness.

“Sometimes your blood sugar doesn’t like you at the moment,” Ella said. “It goes low or it goes high. You fix it, but you never know. Your blood sugar basically does its own thing. You have to chase it around all day.

“I have this thing called a pump; it’s a device that’s basically like my pancreas on the outside. I type in how much carbs I eat in my foods, and if my blood sugar is high, I type that in too. It automatically gives me the amount of insulin I need.”

Both she and Curtis wear an insulin pump, the T-Slim X2, which is integrated with the Dexcom G6 Continuous Glucose Monitoring system for determining blood glucose levels.

The monitor can be paired with a smartphone or other device. It reads blood sugar levels continuously and transmits real-time glucose readings every five minutes. The system mostly removes the need to do fingerstick blood glucose measurements, Dexcom says. The system will trigger an alarm when the patient’s blood sugar enters a danger zone. If it’s integrated with an automated insulin dosing system, a rise in blood sugar would trigger the release of insulin.

The U.S. Food and Drug Administration authorized the Dexcom G6 iCGM system in March 2018.

Curtis said he expects to speak about more improvements to such technology to help diabetes patients when he sees U.S. Rep. Cathy McMorris Rodgers and Sens. Patty Murray and Maria Cantwell.

“I’d like to see if we can improve it to where it can predict before my glucose is too high, so you don’t have to do as many checks and inputs,” he said.

Curtis, who was diagnosed at age 6, watches the Dexcom’s readings on a smartphone app.

“As far as the glucose levels, it has a pretty close guess,” he said. “It can tell when I’m going low or going high.”

About 30 million people in the U.S. have diabetes, although a majority have Type 2, which means your body doesn’t use insulin well and can’t keep blood sugar at normal levels.

For children, just getting diagnosed can sometimes be a trial. Ella had been to urgent care three times because of stomach problems, sluggishness and other symptoms, said her mother, Rachel Ludwig. Health providers initially thought she had the flu.

At the time, Ella was drinking a lot of water, which her mom thought was part of the family’s healthy habits. Her daughter got to where she had to eat slowly and lost about 10 pounds, which Ludwig at first linked to a growth spurt. In October 2016, a specialist sent Ella to the hospital when he noticed she was dehydrated, and her Type 1 diabetes was discovered.

“We believe that ENT doctor saved her life, Dr. Michael Hubbell,” Rachel Ludwig said. “In the diabetes community, we hear about it when a kid doesn’t make it because they’re finding out too late. The symptoms aren’t talked about enough, and the symptoms line up too much with the flu.”

Because Ella is active with dance and theater, her frequent activities can affect her blood sugar too, she said. Candy and snacks are always at hand, her mom added. “You have to have insulin in one hand and sugar in the other hand, and just go for it.”

Ella said she looks forward this year to Camp Stix, a summer camp for kids with diabetes hosted at Camp Reed. She received a scholarship from the Michelle McGann Fund to attend.

“I have made lots of awesome friends because I have Type 1 diabetes,” she said. “Diabetes has meant both good times and tough times.”

Curtis’ mother, Jacqui Jones, has facilitated the Spokane JDRF walk activities the past few years. It draws more than 800 participants.

Jones said Curtis started seeing what he could accomplish after helping with the walk and participating in many camps for kids who have Type 1. He got hooked on one in Montana, Riding on Insulin, that offers snowboarding and mountain bike riding.

She said both Curtis and Ella are inspiring because of their positive attitudes.

“Just the stuff they have to deal with,” she said. “The other night at midnight an alarm went off and I had to wake him. He jumped up and checked his blood sugars; sometimes we have to change his pump site. He has to change it every three days.”

And the blood sugars “are kind of a roller coaster thing.”

“That’s why we’re so impressed with these two and say, ‘You’re still smiling and wanting to talk about it.’ ”

Curtis will go with his father, Scott Jones, to Washington, D.C. They’re both history buffs, so along with seeing some sites, Curtis is looking forward to meeting congressional members. “He’s excited because he gets to share his voice.”

Over the years, her son’s Team Curtis in the JDRF Community One Walk has raised $20,000 for diabetes research. Curtis, who loves fancy cars, said he doesn’t look at having diabetes as a bad thing.

“It’s kind of a blessing,” he said. “I’d never have met some of the amazing people I have and gone to see a lot of cool things, if it weren’t for diabetes.”

He’s also inspired to keep advocating because of the steady encouragement he got from his older brother, Devan Bouge, who was killed at age 24 on Nov. 20 in a shooting.

“My brother was one of my most favorite supporters,” Curtis said. “He’d always be there at all the events. If I just throw it all away, what’s the point of him supporting me in the past? I’m going to keep going.”