Kids Join Stars to Plead for Diabetes Funding

By Susan Levine
Washington Post Staff Writer
Wednesday, June 22, 2005

A three-time Olympian and one of America's most beloved TV actresses provided the star power yesterday in a packed hearing room of the Hart Senate Office Building. But what most moved lawmakers was the presence and testimonials of 150 children -- all of them, like the celebrities, living with Type 1 diabetes.

From swimmer Gary Hall and actress Mary Tyler Moore to 11-year-old Stephanie Rothweiler of Falmouth, Maine, those speaking before the Senate Committee on Homeland Security and Governmental Affairs pushed for expanded government funding of research into the life-threatening disease. They also supported embryonic stem cell research, which many people think holds promise for a cure.

"I actually cannot remember a normal life without diabetes," Stephanie said, meaning the years before she turned 5, when her pancreas functioned normally and produced the insulin that her body needs to get energy from food.

"These days, all I hear is, 'Stephanie, what's your blood sugar?' " Too much sugar and she risks blindness and kidney damage. Too little sugar and the possibilities are coma and death. "My friends have learned what to do if I become unconscious," she said.

Sitting beside her, from Piscataway, N.J., were Aaron Jones, 9, and his sister, Shaynah, 13. "I thought it was all my fault" when Shaynah was diagnosed, too, Aaron said.

And sitting in the audience to lend their silent support: children from across the country, some too young for preschool, others nearly ready for college, each with individual stories and heartache.

The little ones were never very far from a parent, for concerns more medical than behavioral. Amy Carriero of Columbus, Ohio, worried throughout the hour about her 6-year-old son's blood-sugar levels, low since early morning. As the speakers continued, she quietly unzipped a compact pack of instruments -- "the kit," she explained. She motioned for his finger and pricked it to draw a large red drop for rapid analysis. A few minutes later, she did it again, and then again, her only other intervention being the Girl Scout cookie and box of juice she urged on Jake to quickly press those levels higher.

The vigilance must never let up. "Even during sleeping hours," Carriero said. "You wake them up during the night."

The hearing and subsequent visits to congressional offices capped two days of activities for the Children's Congress, which the Juvenile Diabetes Research Foundation International has held biennially since 1999. Type 1 -- once known as juvenile or insulin-dependent diabetes -- is caused when an autoimmune attack destroys the pancreatic cells that make insulin. Every year, the disease is diagnosed in more than 13,000 children in the United States.

Katie Clark of Grandville, Mich., testified with ringlet-strewn Ellie on her lap. She and her husband learned the 5-year-old had diabetes on her first day of preschool last August. Ten months later, she explained, the little girl's fingers are callused from more than 1,400 test pricks and her buttocks are scarred from so many location changes of an implanted insulin pump.

Clark, whose own diabetes was diagnosed nearly 30 years ago, knows how much more is ahead. With her composure breaking, and tears flowing all around the hearing room, Clark almost pleaded: "All I want is to give her back the life she had before August 30."

© 2005 The Washington Post Company