Chat with...Bobby and Isabelle Carpenter, advocates for diabetes research
Published 2:25 pm, Thursday, July 20, 2017
NEW CANAAN — Bobby, 16, and Isabelle Carpenter, 15, were both diagnosed with Type 1 diabetes at age 4.
Since then, they’ve worked to advocate for better research for the disease and ensure adequate federal funding for its treatment. On Monday, the Carpenters will represent Connecticut and join 156 other children with diabetes in Washington, D.C., where they will address members of the U.S. Senate and House of Representatives in the Juvenile Diabetes Research Foundation’s biannual Children’s Congress.
“My parents got an email from JDRF talking about Children’s Congress. We were both very interested in going to advocate for new technology for the artificial pancreas, and stuff with research and insurance, too. We just thought that we should advocate for our disease,” Bobby explained earlier this week, days before the pair were to leave for the nation’s capital with their father, Rob, who also suffers from Type 1 diabetes.
Among the goals of the trip, Rob explained, is to secure continued federal funding, in the amount of $170 million, that is voted on by legislators every two years and promotes research on the disease, for which there is no known cure.
Being in the room with congressmen will be a big step for the Carpenters, though they’ve long been active raising money and educating people about the disease locally. Since their diagnoses, the Carpenters have participated in the JDRF’s annual walks, forming a team under the moniker “the Carpenter Crew” and raising money. Back when Bobby and Isabelle were in elementary school, they even helped organize one of the walks in New Canaan and raised more than $10,000 for the organization.
Isabelle also takes part in an annual fashion show to benefit JDFR.
“This year the Darien Sports Shop sponsored it,” the 15-year-old said. “Three other girls, who also have diabetes, and I get to model down the runway, but also one year we were asked to give a speech. And we give off raffle tickets.”
On a day-to-day basis, Bobby and Isabelle have also educated their friends, sometimes out of necessity.
“It can be a difficult thing, but I think I’ve made it kind of a fun thing. When I was little I used to take kids with me to the nurse’s office to test my blood sugar, because on the way there if I fainted they needed to tell someone,” Isabelle remembered. “But mainly it became a fun thing, like, ‘Oh, can I come to the nurse with you?’”
Frequent trips to the nurse’s office and staying hyper-vigilant about monitoring blood sugar have become the norm for both Bobby and Isabelle, though, after more than a decade living with the disease, they’ve not necessarily become easier.
“In order to stay alive and to make sure we’re in an OK sugar range, we have to prick our fingers. After a while you get these calluses on your hands and it really hurts. But you have to do that like eight times a day. So literally you always have to be thinking about how you’re feeling. And if you’re going to high or too low you have to treat your body with insulin,” Bobby said.
It’s not an easy job, but it’s one the siblings said is made easier because of the people around them also dealing with diabetes. Isabelle stressed that she and her brother were not the only New Canaanites with diabetes and, in fact, there are at least five others at New Canaan High School that she often sees on the way to and from the nurse’s office.
“We all go to the nurse’s office around the same times. I see them them in the hallway and we’re actually really good friends,” Isabelle said. “It’s nice to have someone to say ‘Hi’ to and relate to with the disease.”
Similarly, the Carpenters are hoping that a sort of support system will emerge from their trip to D.C., surrounded by other children with Type 1 diabetes.
“I think it’s going to be a cool experience because it’s not just us; it’s other people who share common struggles that we all go through,” Bobby said. “I feel that we could create really good friendships by expressing what we have to go through. It could be like a mini support group.”
For their father, who was diagnosed at age 13, his children’s foray into advocacy is like the passing of the generational torch.
“We need to encourage the next generation and keep it going until the disease is cured,” Robert said.