WARWICK, RI — Warwick Veterans Middle School junior Chloe Pena, 13, has been living with Type 1 diabetes since 2017, staying on top of her blood sugar and managing her health with the help of medical advances she hopes to convince Congress to continue funding.
She’ll make her case to Congress as a delegate during the Juvenile Diabetes Research Foundation (JDRF) 2019 Children’s Congress July 8-10.
“To me, diabetes is a rollercoaster. It’s scary, you don’t want to go on, and there are many highs and lows. But with the right mindset, checking your numbers, and the support of JDRF and Congress, you can hope that it will be easier to manage,” said Chloe.
Chloe said she has help monitoring her blood sugar thanks to a continuous blood sugar monitor she wears. The device features a small, needle-like probe that slides under her skin to sample her blood once every 30 seconds. She can wear the device attached to her stomach, arm or her back, with the probe just under the skin, providing her constant information about her blood sugar leve
That technology, and her access to it, was made possible by federally-funded research, Chloe said. Continuing the funding that makes her current medical challenges easier, or even promises to cure her of diabetes, can make a big difference in diabetes patients’ lives in the future, she said.
“I have to convince people to continue the funding for diabetes to come up with technologies to make dealing with Type 1 diabetes easier and maybe also we can come up with a cure,” Chloe said.
JDRF’s top legislative priority is renewal of the Special Diabetes Program (SDP), which contributes $150 million annually to T1D research through the National Institutes of Health (NIH).
Traci, Chloe’s mom, said her daughter’s diagnosis was a surprise, even though she and other members of Chloe’s family have also been diagnosed with the disease. That summer, Chloe had been drinking more water and seemed more thirsty than usual, but the weather was also unusually hot and humid, so her more frequent thirst didn’t raise any alarms.
Still, the family’s history nagged at her mind, so the Saturday before Chloe was scheduled to spend a day at camp, they took her in for a blood test. The next day, Traci dropped Chloe off at camp.
“Monday, I got a call that said I should take her to the hospital,” Traci said. The alert was a lucky break, in a way, she said, since many children are diagnosed only after diabetes symptoms send a child to the hospital. In Chloe’s case, they caught it before it caused her so much stress she needed an emergency room visit.
In the first few months following her diagnosis, before the blood sugar monitor, Chloe had to have insulin shots at 2 a.m. and during meals.
“So we had a timer set for two in the morning,” said Traci. Now, she always wears the blood monitor. Congressional funding helped develop the monitor that made her health much easier to manage, Chloe said.
Chloe won her spot on the Children’s Congress thanks to a letter and YouTube video and application she sent as a member of the JDRF applying to be among those chosen to make the case for continued funding before Congress.
Chloe’s application was one of 1,600 applicants, and later was among 160 picked to make the trip to Washington to help make the case for continued diabetes treatment research.
Joining the U.S. Delegates will be five International Delegates traveling from Australia, Canada, Israel, the Netherlands and the United Kingdom. Together, the JDRF Youth Delegates will convey a clear message to the Federal Government that T1D is a global problem that requires a global effort.
“Every day these children and their parents face the burden of Type 1 diabetes and by sharing their stories they become powerful advocates in the fight to end this disease,” said Liz Mullane, Executive Director, JDRF New England Chapter. “The Delegates are a representation of millions of other families who need the support of the government. Children’s Congress gives the T1D youth community a unified voice in front of Congress and a way to urge our government leaders to continue supporting research.”