Springfield State Journal-Register

June 21, 2005

Springfield youth lobbies Congress for diabetes research funding

BY Dori Meinert
Copley News Service

WASHINGTON -- Nine-year-old Sarah Johnson of Springfield has a lot of experience educating people about her disease. When she was in first grade, a classmate asked whether he, too, would get diabetes after his pencil accidentally touched her shirt.

Sometimes, she has learned, educating people can be tiresome.

Nevertheless, that's just what Sarah is doing in Washington this week.

She's here for the 2005 Juvenile Diabetes Research Foundation's Children's Congress. She's one of 150 children from across the country lobbying for more funding for research into juvenile diabetes.

On Monday, they stood on the steps of the U.S. Capitol and sang a song called "Please Remember Me," hoping their Senators and House members would remember their faces the next time there is a vote on an issue related to diabetes.

On Tuesday, Sarah will watch as some students testify at a Senate hearing and then she'll meet with Rep. John Shimkus, R-Collinsville, Sen. Barack Obama, D-Ill., and an aide to Sen. Dick Durbin, D-Ill.

She wants members of Congress to know that having juvenile diabetes is "hard." She wants to explain how she pricks her fingers six to eight times each day to test her blood sugar and how she has to get four injections a day. It's tough not being able to enjoy all the sports that other kids do and especially not being able to eat what you want to eat. She can't leave the house without her testing kit and a snack in case her blood sugar drops too low.

But the hardest part of living with juvenile diabetes is never getting a break from it, she said.

"I want a cure," said Sarah, who just completed third grade at Chatham Elementary School. She was diagnosed at age 4 and has been hospitalized twice. She's been to the emergency room many more times.

She doesn't understand how her congressman can be against stem cell research when it might be able to help her.

"We know that people have moral differences of opinion about the beginning of life. But we just want to make sure they understand what they're voting on," said her mother, Julie Johnson. "I think it makes a difference to actually see the kids."

Sarah also was accompanied by her sister, Katie, 11, and her grandparents, Cliff and Mary Tompson of Columbia, Mo.

The best part of the trip so far for Sarah has been making new friends, who also have diabetes. As they sat down for dinner Saturday night, they all tested their blood sugar.

"When you're not the only one, it's kind of nice," her mother said.

To them, Sarah didn't have to explain anything at all.