Dealing with diabetes "is a pain," says Ethan Erickson. The 11-year-old seventh-grader and baseball player from Taylorsville checks his blood sugar levels daily and regulates them with an insulin pump that is his constant companion. Every three days, he says he must change the spot where the insulin is injected through a catheter from his belly to his arm or some other spot and back again. Such constant monitoring is an irritation and an inconvenience, he says.
Ethan and Savannah Taylor, 12, of Lehi, will share their stories of living with juvenile diabetes with members of Congress this month. The youngsters are Utah's delegates to the Juvenile Diabetes Research Foundation's Children's Congress, June 20-22 in Washington, D.C. Children from across the U.S. will lobby lawmakers for funding for treatment and research on a disease that results when the pancreas doesn't produce enough insulin, a hormone that converts sugar and other foods into energy necessary for life.
The 150 American delegates will be joined by seven others from Australia, Canada, Denmark, Israel, Mexico, the Netherlands and the United Kingdom.
"Insulin is just a lifeline, but not a cure for diabetes," said Ethan of the message he wants to deliver to Congress. He also would like to see the Food and Drug Administration approve an artificial pancreas that has been undergoing research.
Ethan said he was chosen as a delegate after filling out a lengthy form and writing an essay about the disease. He has honed his speaking skills by visiting businesses to talk about juvenile diabetes.
His mother, Tiburon, said she and Ethan's father, Adam, help Ethan monitor and regulate his blood sugar. Failing to do so could be fatal.
Savannah, who likes soccer, horses and playing the violin, said she goes through the same daily process as Ethan and is looking forward to talking to members of Congress.
Her message is similar to Ethan's: "I want to tell [Congress] that [researchers] are really close to a cure and should just take further steps and find it."
Savannah said her mother, Andrea, is also diabetic and that the two of them regularly visit Primary Children's Medical Center in Salt Lake City to talk to children who were recently diagnosed and educate them about living with diabetes.
Her father, Zach Taylor, said Savannah leads a mostly normal life but with some dietary restrictions.
"It is not slowing her down," he said.
Laura Western, executive director for Utah chapter of the Juvenile Diabetes Research Foundation, which also includes Idaho, said since the Utah chapter was launched in 1996, it has raised more than $1 million each year for research.
The Utah chapter has participated in the Children's Congress, held every other year, since 1999, according to Western. She is proud of Ethan and Savannah's efforts to educate Utah's congressional delegation about the importance of continuing research.
"A cure is always the goal," she said. "In the past 10 years, [insulin] pumps have become better, monitors faster, needles smaller and maybe a vaccination is in the future. One of the most promising [tools] is an artificial pancreas, but that is still not a cure."
She said the children with Type 1 diabetes are extremely aware of what is happening inside their bodies at all times and wouldn't be surprised if someone with the disease ends up making the breakthrough needed for a cure.
"For their whole lives, [those affected] have to check their blood up to eight times a day," Western said. "It's not fun."
To learn more about JDRF's Children's Congress, visit cc.jdrf.org. To read about community outreach fundraising in Utah, visit jdrf.org/utah.