Since they were diagnosed with Type I Diabetes at the age of 5, 8-year-old Bailey Brennen and Allyson Biersack of Fairfax Station have had to adjust to living with daily shots and blood samples.
"They have no feeling in their fingertips any more," said Kelly Brennen, Bailey’s mother. "Her fingers are all callused, like an old man’s."
Along with more than 100 other children who also have Type I Diabetes, Bailey and Allyson visited Capitol Hill this week for the third biannual "Children’s Congress" to raise awareness and lobby Congress for greater funding for juvenile diabetes research.
"They're the decision makers, and I think it's a much stronger impact to have a child who is living with the disease talk about it, than a high-powered lobbyist," said Pamela Gatz, executive director of the Capitol Chapter of the Juvenile Diabetes Research Foundation, which sponsors the Children's Congress. "These kids really bring a face to the disease."
Compared to its cousin, Type II diabetes, which affects 90-95 percent of the 18 million Americans who have the disease, according to the most recent statistics from the American Diabetes Association, Type I diabetes is much less common. It is most common in those under the age of 30, and affects only around 1 million people, many of them children. Those with Type I diabetes have no ability to produce insulin in their pancreas.
Allyson's mother, Anne Biersacl, said she first considered the possibility of her daughter having diabetes when Allyson was 5.
"She was just thirsty all the time. I thought ‘Something’s not right here,’ because she kept drinking," said Anne Biersack.
In both children, diabetes means regular battles with blood sugar levels, which can shift dramatically from hour to hour. Some days, the children are just fine. Other days, said Anne Biersack, her daughter will tell her "I hate you," which Biersack said is abnormal for her typically polite daughter, a second grader at Sangster Elementary.
"I’m sad every day. It breaks my heart," said Anne Biersack.
KELLY BRENNEN said her daughter Bailey battles daily with feelings of lethargy when her blood sugar soars too high or plummets too low.
"It’s like eating two Thanksgiving dinners, you don’t want to do anything," she said. "Then, you feel sick on top of that, you feel dizzy."
Another major side effect of the disease is the lack of immune system response, which means a minor cold or flu bug might spell big-time trouble.
"A stomach bug, most kids would be over it in 24-48 hours, our kids go to the hospital and get an IV," said Kelly Brennen. Allyson Biersack has suffered seizures twice from diabetes.
And then the girls must face the regimented finger-prick, blood sugar-level checks.
"I don’t like how we have to get the shots," said Bailey Brennen, whose mother said a day of five insulin shots and five tests is not unusual. The record, she said, was 20 finger-pricks in one day.
The reason for the Children's Congress, said Kelly Brennen, is to apply funds to research possible cures, instead of feeding the machine that is diabetes prevention.
"We spend so much money on diabetes care, it’s just unreal," she said. "We are so lucky we can afford all this stuff. Even with insurance, we spend about $2,000 a year on all this."
Started in 1970, the JDRF places its emphasis on increasing funding for research which will ultimately help those with both Type I and Type II diabetes. Type II typically is diagnosed in those over 40 years of age, and the pancreas still produces some levels of insulin.
"Our mission is to find a cure for diabetes and its complications through the support of research," said Gatz, who said JDRF has raised over $800 million toward that goal since its inception.