ELLSWORTH − Lydia Bryant is only nine, but she wasn’t too worried about speaking to a group of senators in Washington, D.C. this week.
“I have talked in front of over 500 people before,” said Lydia, swaying back and forth in a rope swing at her home in Ellsworth on Friday.
“Actually, I never actually talked to them face-to-face. They watched me on TV.”
Lydia has been talking to a lot of adults lately, and it’s usually about one topic: diabetes.
This week, she headed with her family to the nation’s capitol to lobby for increased research funding and access to treatment for children living with the disease. She is one of 160 delegates to the annual JDRF (Juvenile Diabetes Research Foundation) Children’s Congress.
The Ellsworth student was diagnosed with Type 1 diabetes last year, and is already delivering long monologues on the topic, peppered with acronyms and technical language about pods and pumps. On Friday, Lydia announced to her mother that she was “closed looping,” meaning her pump was automatically adjusting her insulin levels.
“It’s basically an oversized beta cell,” Lydia declared, pulling her shirt up to reveal a card-sized pump taped to her stomach. She monitors the levels herself using an app on her iPhone.
Nearly 1.25 million Americans live with Type 1 diabetes, according to the American Diabetes Association, and another 40,000 are diagnosed each year. The disease typically appears in adolescence but can affect those of any age.
In Type 1 diabetes, the body doesn’t produce insulin, a hormone that is necessary to get glucose from the bloodstream into the cells of the body.
Lydia said that before she was diagnosed she was often thirsty, “and that meant I had to go to the bathroom. That had been going on for about a year.”
She remembers the day she was diagnosed: she was at summer camp. “I got picked up early but I got to go up in one of the golf carts, so that was pretty cool…it was kind of hard when mom said that I might have diabetes.”
“Our world has changed many times since she was diagnosed last year,” said Lydia’s mother, Laura, in an email. “Most significantly with her diagnosis but with each piece of technology she has gotten there have been huge changes in our family’s lifestyle.”
The family has insurance coverage, said Laura, but her daughter wants to lobby for increased insurance access and a greater choice of insulin pumps for others who have the disease. Lydia’s pump allows her to be active, said her mother, but not all pumps are so flexible.
Lydia also will be asking Congress to renew the Special Diabetes Program, which to date has funded $2.8 billion in research and is set to expire this September.
“This program is of critical concern to Lydia because of the number of cutting-edge research projects, like beta cell transplants, that have the potential of becoming a cure but cannot continue without ongoing funding,” said Laura.
The family has been researching systems that will automate insulin delivery and stabilize the nine-year-old’s blood sugar, said Laura.
“These systems have been built by volunteers and are being actively used now in the DIY community but there is also a push” to get FDA approval.
“She’s coming up on a year since her diagnosis and I think it’s one of those things where along the way you’re just doing what needs to happen, then you look back and you’re like ‘oh that was big,’” said Laura.