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Local children to be part of special lobbying effort for diabetes research
Tuesday, June 19, 2001 By Virginia Linn, Post-Gazette Staff Writer
Michelle Kiley was diagnosed with diabetes when she was 3. When her oldest daughter, Eliza Jayne, turned 3 two years ago, she also was diagnosed with diabetes.
"We're going to tell our story, how we're a team, how we work on [managing diabetes] together," Kiley said about the presentation she and Eliza will make next week at a congressional hearing in Washington D.C. as part of the 2001 Children's Congress for the Juvenile Diabetes Research Foundation.
Eliza, 5, of Tarentum, and Ryan Barunas, 16, of Franklin Park, are two local youngsters with diabetes selected to be among 200 children nationally for the campaign to urge Congress to increase funding for diabetes research and treatment.
Juvenile or Type 1 diabetes, which affects more than 1 million Americans, occurs when the pancreas stops producing insulin, the hormone that enables people to get energy from food. To survive, people must regulate their blood sugar through vigilant testing and insulin injections.
The first Children's Congress was held in 1999, but it included no Western Pennsylvanians.
"The main point is, we're trying to put a face on diabetes," said Kiley, who is now 29. "A lot of people believe insulin is a cure, but it's just a life-support system. It's frustrating that things can still go wrong. It's a daily chore, an hourly chore."
Ryan, a student at North Allegheny Intermediate High School, has been pretty active, participating on a crew team and recreational basketball league, despite having to test his blood sugar four to six times a day. Up until a year ago, he also had to give himself an injection four times a day, something he never got used to.
Both Ryan and Eliza are reaping the benefit of some recent advances in diabetes treatment.
Ryan now wears a insulin pump, which continually sends insulin into his blood through a tube and needle inserted in his abdomen. The pump controls fluctuating blood sugar levels more effectively.
This gives the teen-ager more flexibility in his diet and daily activities. "I can eat more when I want more. I can go out with my friends and not have to worry about doing the shots," he says.
Eliza received her pump in February, at the time being the youngest patient at Children's Hospital to wear one. Without a pump, children must eat at specific times of the day or their blood sugar can get out of whack. "It's hard to force a 5-year-old to eat," Kiley said. "It just gives us a lot more flexibility."
While the pump has been a boon for diabetes patients, more help is needed. Research is focused on finding ways to restore normal blood sugar levels, avoid and reverse complications and prevent the disease.
Foundation volunteers last year persuaded Congress to increase the federal budget for diabetes research by 60 percent. Congress also passed special legislation adding $240 million over the next three years to a special Type 1 diabetes research program.
Ryan's mother, Maureen, said it never occurred to her that children got diabetes before her son was diagnosed at age 4. "I think for the most part, until it affects someone you know, the awareness is probably not real high."
The Children's Congress hopes to change that. As part of their visit to Washington, the 200 children on Monday morning will gather on the Capitol steps to sing a song written just for the research foundation efforts that concludes with:
"While you're running free
Promise to remember me."
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