As the daily noon bell rings at Ohlone Elementary School in Palo Alto, most children think of one thing — recess.
But for 10-year-old Taylor DeGroff, it is another reminder that she is a little different than the rest of her classmates.
“I’m really used to it by now,” she said, recalling the daily routine of waiting for the school nurse to check her blood sugar level and administer an insulin shot before playing with her peers.
Diagnosed with Type 1 diabetes at 2 years old, DeGroff is one of two Bay Area children chosen to raise awareness at this year’s Juvenile Diabetes Research Foundation’s Children’s Congress in Washington, D.C. San Francisco’s Sarah Young, 13, will join DeGroff and 148 other Type 1 minors Monday through Wednesday on Capitol Hill.
Both girls, despite battling an illness that affects about 3 million Americans, can barely contain their excitement about heading to Washington to put a face on the disease for which there is no cure.
“I’m really excited and I think that it’s really important to get politicians to know how important [Type 1 diabetes] is,” said Young, who was diagnosed about three years ago after losing 25 pounds during a summer and attends San Francisco Day School. “When I first got diagnosed, it was harder than it is now. Now, I’m used to it.”
Despite DeGroff and Young acknowledging excitement for raising awareness for Type 1 and claiming that they are used to the daily insulin shots, their parents find it difficult to describe the situation as normal.
“Taylor is a very active girl,” said Dain DeGroff, her father. “You never want to hold a kid back.”
Every year, Taylor DeGroff has to make the announcement to her class about her illness.
“It takes a lot to say ‘I’m different,’” Dain GeGroff said. “It takes a lot of courage.”
But while Taylor DeGroff said she has grown accustomed to having to wait for the school nurse to check her blood pressure before running off for lunch time, Dain DeGroff still struggles.
“That’s what is most frustrating,” Dain DeGroff said, recalling stories that Taylor DeGroff had to sit and wait for the nurse during recess while the rest of the kids played. “It’s just a lot. It’s asking them to mature a lot earlier.”
Sarah’s mother, Rosemary Tarlton, concurs.
“It’s something that she has to deal with,” Tarlton said, recalling when Young’s previously healthy body was starving itself. “It was very scary.”
A self-proclaimed “Gleek,” Young is now at the stage where she can take jelly beans whenever her blood sugar is low before a run.
“I think this trip to Washington ... it’s not about how awful [Type 1 diabetes] is,” Tarlton said. “But through science, maybe someday she won’t have to prick her finger 10 times a day.”
Joining the students will be JDRF International Chairman Mary Tyler Moore, who is also Type 1. Students at the congress, which takes place every other year, have met the president in previous years, though it is unknown if they will meet President Barack Obama this week.
What: Juvenile Diabetes Research Foundation’s Children’s Congress
When: Monday through Wednesday
Where: Capitol Hill, Washington, D.C.
What: 150 children representing 50 states and seven countries.
Goal: Raise awareness about Type 1 or juvenile diabetes and increase congressional support to find better treatment and a cure. The event has been held every other year since 1999. About 3 million Americans may have Type 1. Each year, more than 15,000 children and 15,000 adults are diagnosed with Type 1 in the U.S.
Source: Juvenile Diabetes Research Foundation