WASHINGTON -- Modesto schoolgirl Rosa Leguria lifts her shirt and points, without shame, at the insulin pump that helps keep her alive.
"I'm going to tell Congress why it's important to find a cure for diabetes," she said.
Rosa is 9 years old and a student at Mary Lou Dieterich Elementary School. She is heartbreakingly bright, funny and athletic. She has type 1 diabetes, which will shadow her, hourly, for the rest of her life.
Eight to 10 times a day, her finger is pricked to test her blood sugar. Every three or four days, her parents stick a needle in her stomach and change the infusion set for her insulin pump. A backup hypodermic needle loaded with glucagon is held in reserve.
"It's really a 24-7 disease," Rosa's mother, Gina, said Monday.
Which is why, this week, the Leguria family is in Washington. Rosa is one of 150 children and teenagers participating in the annual Children's Congress sponsored by the Juvenile Diabetes Research Foundation. The lobbying event, now in its 10th year, focuses attention on research and funding needs.
In meetings with local lawmakers, the Children's Congress participants are promoting the National Institute of Health's diabetes program. The 12-year-old research program provides $150 million a year for type 1 diabetes research.
Type 1 diabetes, also called juvenile diabetes, is a pernicious condition. Rosa's pancreas does not produce enough of the insulin needed to move glucose from the bloodstream into the body's cells. Blood sugar levels rise even as cells are deprived. Heart, eye, kidney and nerve damage can result.
The average lifespan of a juvenile diabetic is seven to 10 years less than someone without the disease.
There are about 23 million U.S. residents with diabetes, according to the NIH. Of these, roughly 10 percent have type 1 and the remainder have type 2, which used to be called adult-onset diabetes.
Latinos are more likely to suffer diabetes than whites.
The treatment is expensive. Average health care costs for diabetics are twice that of nondiabetics. The diagnosis can be devastating psychologically, too,
"I had a friend who wanted to be an astronaut," Rosa said. "When she learned that she was diabetic, she was afraid she couldn't be any longer."
"But she can," Rosa added, with what appears to be characteristic verve.
Rosa declares her own intention to become an endocrinologist, just like those who have treated her since her diagnosis in 2004. Her father, Jack, remembers the day precisely.
It was a Friday, Dec. 3. Rosa had been really thirsty for several weeks. She had also been urinating a lot. Her parents thought it was because she was drinking so much water. In fact, her body was desperately shedding excess sugar.
When she complained of a stomachache, her parents brought her to a doctor, who diagnosed her almost instantly.
"At first," Jack Leguria said, "you're in a state of shock."
He is a project manager for Stanislaus County. His wife is an attorney who handles legislative affairs for the Stanislaus County Sheriff's Department. For them, diabetes management is a team affair. Carbohydrates are carefully counted. Pizza and doughnuts are rationed. Constant vigilance is required.
"It's kind of like having a newborn baby at home," Gina Leguria said.
Politically, too, the disease can invoke complicated responses. In California, nurses have pushed legislation that would require schools to employ registered nurses for the job of handling students' insulin pumps. Parents are skeptical.
In Washington, funding for one disease can sometimes come at the expense of another.
"This is funding," Gina said, "that affects real people."
Bee Washington Bureau reporter Michael Doyle can be reached at firstname.lastname@example.org or 202-383-0006.