Diabetic Park City students make voices heard in halls of Congress
‘We all felt like we had a ton of power and we could definitely make a difference’
August 22, 2017
Sophia Adrian had never felt anything like it. She walked the halls of Congress, more than 150 other diabetic children joining her, and marveled at the power they held to make a difference.
Sophia and her younger brother Alex Adrian, who both have Type 1 diabetes, were in Washington, D.C., to lobby Utah's congressional delegation on behalf of the Juvenile Diabetes Research Foundation. Their goal was to help persuade Congress to pass an extension of the Children's Health Insurance Program, a bill that includes $150 million annually for diabetes research.
Armed with the stories of how diabetes has affected their lives, Sophia and Alex met with Sen. Orrin Hatch and his aides, as well as staffers from the offices of Sen. Mike Lee and Rep. Rob Bishop. Though they said only Hatch committed firmly to voting in favor of the bill during their meetings, they returned to Park City feeling like they had made their voices heard.
"We all felt like we had a ton of power and we could definitely make a difference," said Sophia, a ninth-grader at Treasure Mountain Junior High School. "Talking eye-to-eye with Sen. Hatch definitely made it feel like we could actually change something."
The experience was also transformational for Sophia and Alex's parents, who accompanied them on the trip. Their mother, Christina Miller, who also has Type 1 diabetes, left with a renewed appreciation for the power of democracy. The final result of their effort was unclear — Congress has until Sept. 30 to renew the funding — but Miller was invigorated.
She had never before been to Washington, D.C., and her participation in democracy had been limited to following the news, voting and occasionally sending a letter to Congress. But meeting with Utah's congressional delegation and wandering the Capitol Building, which was littered with children dressed in Juvenile Diabetic Research Foundation t-shirts, was enlightening.
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"It really showed the power of not only a single individual, but of a pretty small group of people who were all coming together to fight for a common cause," she said. "It showed that if you're fighting for something like that, then you can get a lot of bipartisan support."
The fact they were there during the peak of the healthcare debate made it even more memorable, as Congress was with energy as lawmakers worked to either save or dismantle the Affordable Care Act. Miller said it was not rare for high-profile politicians like Speaker of the House Paul Ryan and Sen. John McCain to brush past them while hurrying to meetings.
"It was such an incredible experience," she said. "I told Sophia, 'This is once in a lifetime. Maybe once in four lifetimes.'"
The uniqueness of the opportunity did not escape Sophia. She admitted to being nervous while meeting with Hatch and the congressional staffers but said the discussions were ultimately encouraging.
"I definitely feel like I did go and do my part, and that's what I was most excited for — to make a difference," she said. "I was really happy. Hopefully (the bill) will go through."
In addition to lobbying for an important cause, though, the trip was special for another reason. For one of the first times in their lives, Sophia and Alex were surrounded by other children who know exactly what it's like to grow up with diabetes.
Miller said watching her children connect with others who share a similar experience was moving.
"They can understand that other people are affected by it and make some lifelong friendships with those kids who are similar to them and also struggling with the disease," she said. "That was a great thing."
Sophia said meeting the other children and forging quick bonds with them proved to be one of the aspects of the trip she will remember most.
"It was really cool to know that other kids my age are going through what I'm going through," she said. "We all exchanged our stories and what about having diabetes really bothered us and what we do to help with what bothers us. It was a weird feeling, knowing that everyone else in that room had diabetes."