Diabetes Lobbyist Speaks Up: Third-Grader Joins Plea for Funds
Tuesday, June 16, 2009
A month after President Obama nominated Sonia Sotomayor for a seat on the U.S. Supreme Court, 150 children with Type 1 diabetes will go to Capitol Hill to urge Congress to raise awareness of the disease and increase funding for research. The disease was diagnosed in Sotomayor when she was 8.
The delegates, ranging in age from 4 to 17, will travel to Washington next week from every state; representing the District in the Children's Congress of the Juvenile Diabetes Research Foundation (JDRF) will be 8-year-old Charlotte Rose LaMotte, who lives in Georgetown.
Charlotte Rose, soon to be a third-grader at the Beauvoir School, is already a diligent advocate for her cause, having written a 13-page message to Congress about what it's like to live with Type 1 diabetes and another long letter to Obama supporting Sotomayor's nomination because it "proves that people with diabetes can do anything."
"When I first got diabetes, I told my parents that I was too young to have diabetes and that it was too scary," Charlotte Rose wrote in her letter to Congress. "I asked them to make it go away. I know they would do this if they could."
Elisabeth LaMotte says that her daughter received her diagnosis early last year. Charlotte Rose was urinating a lot, and when her doctor tested her blood sugar level and found it to be 400 milligrams per deciliter (normal is about 100), Charlotte Rose went straight to Children's National Medical Center in an ambulance.
The family got involved with the JDRF via a fundraising walk. The organization then e-mailed Elisabeth LaMotte a video of children participating in past Children's Congress events.
"Charlotte Rose saw the video and said, 'Oh, Mommy, I want to do that!' " LaMotte recalls. "She is really motivated."
LaMotte's only concern about her daughter's participation is what she might hear during the event's hearings. The discussion will almost certainly address complications of diabetes, some of which LaMotte hasn't discussed with Charlotte Rose.
Charlotte Rose described the challenges she has already faced in her letter to Congress, which her mother helped write.
"I have to prick my finger and check my blood sugar five to ten times each day," she wrote. "Sometimes when other kids see me doing this they say it is gross and that really hurts my feelings. I need an insulin shot every single time I eat, and it doesn't hurt as much as you might think once you get used to it, but it hurts." (She now uses an insulin pump, which delivers the hormone via a small device attached to her body.)
About 3 million Americans have Type 1 diabetes, and 15,000 children receive diagnoses of the disease annually, according to a JDRF spokeswoman. The organization, which donated $156 million to diabetes research last year, pays for the 150 delegates, plus one parent each, to travel to Washington.
Charlotte Rose hopes that her participation in the Children's Congress gets her closer to her dream of being cured of diabetes by the time she's a teenager.