"Right now, as far as Zach is concerned, he is an island. This congress will give him a chance to see other children going through the same thing he is," Harvey Shapiro said.
"It's important for members of Congress to understand how difficult life with diabetes is day to day."
Children ages 2 through 17 will attend the congress, representing all 50 states, Washington, D.C., and Puerto Rico. They represent the one million people with with Type 1 diabetes, according to Heather Brucker, a Juvenile Diabetes Research Foundation board member.
After the diagnosis of Zachary's disease in December 1999, he and his parents spent four days at Bryn Mawr Hospital learning how to test and treat diabetes.
"One of us had to be with him in the hospital every minute of every day," Deirdre Shapiro said. "There was a lot of reading, a lot of practice - neither of us had any medical background, so everything was new to us."
She quit her part-time job because of the need for round-the-clock monitoring of Zachary's condition.
The morning blood test determines Zachary's insulin needs and breakfast. A morning shot will last through 4 p.m., Deirdre said, but Zachary must be watched throughout the day.
A drop in blood sugar because of a missed meal could cause Zachary to faint. His blood-sugar level must be checked at lunchtime, and he must eat small meals throughout the day to balance food intake and insulin.
If an afternoon includes sports, Harvey Shapiro is on the sidelines with snacks as needed.
"I come to every T-ball game with sugar wafers in my pocket," Harvey Shapiro said.
"If he comes off the field and tells me, 'I feel low,' I need to give him something to eat right away."
At dinner time, Zachary's blood is tested again and he receives a shot. He has a snack before bed and a final shot between 11 and midnight each night.
Blood-sugar levels are affected by stress and diet. The required insulin dosage can change every day for every person with the disease.
A trip to a friend's house for a play date means explaining what Zachary can and cannot eat. The smallest deviation from a menu, such as vanilla ice cream in place of frozen yogurt, can mean a serious change in blood sugar.
"Insulin is not a cure. Zachary must be tested and given shots 24 hours a day, seven days a week. There are no days off," Deirdre Shapiro said.
"You don't outgrow Type 1; it doesn't go away."
While Deirdre and Harvey Shapiro carefully monitor their son, they are aware of the future medical complications that can come with diabetes, including loss of eyesight and limbs.
Zachary, who is looking forward to seeing the Smithsonian Institution's exhibit on dinosaurs during his visit to Washington, has strong opinions about his disease.
"Diabetes is not good," Zachary said. "I don't like getting needles."
The Shapiros plan to meet with Pennsylvania Sens. Rick Santorum and Arlen Specter and Rep. Curt Weldon this week.
"We have never said, 'Why us?' From the beginning we have not had time to worry or ask why," Harvey Shapiro said. "We are focused on working toward additional funding to help find a cure."
Gloria A. Hoffner's e-mail address is firstname.lastname@example.org.