Lexi Quilty, 17, is headed to the nation’s capital in less than a month as both a tourist and delegate.
Along with roughly 160 other minors, Quilty hopes to explain to legislators what it’s like to live with Type 1 diabetes and what lawmakers can do to help.
She was diagnosed with the disease on April 2, 2013 — a date she finds easy to remember.
“At 10 years old, learning to rewire your life, it really catches you off guard,” said Quilty, who will be a senior at Guyer High School in the coming school year.
For the most part, that means having to plan ahead to outpace a failing biological function her body is meant to do on its own: regulate insulin levels.
Her trip to Washington is coordinated through the Junior Diabetes Research Foundation Children’s Congress program. She first joined the Greater Dallas Chapter of the organization roughly two years after being diagnosed, and she’s been a youth ambassador for about four years.
That means she regularly addresses crowds to spread knowledge about what it means to live with Type 1 diabetes, which is often confused with Type 2 diabetes.
Two bits of technology, which she wears constantly, have helped her more easily manage her condition, but no cure exists. A glucose monitor helps track her levels, as well as understand what they might do in the short term.
If they rise too high, she treats with doses of insulin. On the other hand, if her glucose level drops too low, she knows to eat something sugary soon.
A slim insulin pump also keeps her from having to worry about needles. While the technology makes managing the disease easier, it still leaves treatment as a reactive process.
Trevor Watson could count on one hand the number of times he and his wife have slept through the night in the past two years. Their 6-year-old son, David, was diagnosed with Type 1 diabetes roughly two years ago.
He said that contrary to popular belief, Type 1 diabetes, which was once known more commonly as juvenile diabetes, is often thought of as a minor inconvenience — something that will fade away with proper treatment.
“I think folks just don’t realize how life-altering or exhausting it is,” Watson said. “I think they don’t realize it is 24/7.”
He said he’s often asked whether his son’s condition has leveled out, “as if you take a pill and it gets better.”
Instead, the disease is something that can disrupt not only the lives of those with a diagnosis, but friends and family members as well.
Watson said he and his wife have to give other parents a rundown of what the disease is and how it’s treated before their son can enjoy a play date.
Quilty said she has friends and family trained to look for warning signs, and several are able to remotely monitor her levels through their smartphones.
That means that if her levels are too far off, she might get calls from several people at once checking on her.
While she remains hopeful for a cure within her lifetime, recent and upcoming medical advances keep her spirits up most of the time.
Even with the near-constant anxiety that can accompany the disease, misconceptions, misinformation and overall ignorance also contribute toward the trouble brought to the life of a diabetic.
That struggle in particular is a large motivating factor for Quilty’s advocacy, which has brought her recognition within her local Junior Diabetes Research Foundation chapter, and will soon send her to Capitol Hill.
While researchers continue to search for a cure and improve treatments, and JDRF continues its fundraising efforts, Quilty is looking forward to her next step: attending the Children’s Congress next month.
She will head to Washington on July 5 for a few days of sight-seeing. The congress will take place July 8-10, when delegates from across the country will attempt to bend the ears of any and all legislators and staffers they can.