By Janis Fontaine
Watch out, Washington. Juliet Baum is headed your way.
The 11-year-old Gulf Stream resident was chosen from more than a thousand applicants to be one of 160 delegates at the Juvenile Diabetes Research Foundation’s 2019 Children’s Congress.
Children ages 4 to 17 from 50 states will visit lawmakers in July to talk about an important topic: Type 1 diabetes.
Juliet is a fifth-grader at the Gulf Stream School, where she loves history and is sometimes told she talks too much. She was diagnosed with Type 1 diabetes when she was 6 years old. Since then, her life has been a series of finger sticks and insulin injections to compensate for the work her pancreas doesn’t do.
Type 1 diabetes, formerly called juvenile diabetes, is a serious disease with real medical risks, but it hasn’t been able to slow Juliet down.
There are a few new rules and limitations, she admits.
“I can’t go to sleepovers,” she says. “That’s one thing. And I can’t eat what everyone else is eating.”
Her mother, Jill, worries she’ll need help and no one will know what to do. When Juliet’s blood sugar is too low, she can be unable to help herself. She needs an advocate on call. Because the Gulf Stream School didn’t have a school nurse, Jill parked outside all day every day while Juliet was in class, just in case.
Even though Juliet could die from eating a candy bar, diabetes is more of an annoying inconvenience. She still loves to swim, play soccer and hang out with friends. Juliet’s optimism doesn’t waver and her sense of humor has a way of showing up when things get tough.
The blood sugar of a person with diabetes can fluctuate widely — Juliet’s has been as high as 600 mg/dL and as low as 29 mg/dL, both of which are life-threatening.
At first Jill pricked Juliet’s fingers many, many times a day, even waking her in the middle of the night. Juliet jokes that one finger got the most attention. “We call it Old Faithful,” she laughs.
Jill estimates Juliet has endured more than 12,000 finger sticks over the last five years. Now, instead of finger sticks, Juliet has a continuous glucose monitor that sends her blood sugar levels to hers and her mother’s cellphones in a steady stream of real-time data, painlessly and efficiently.
Both mother and daughter say this is what research money can do, and the purpose of attending the conference, Juliet says, is to keep that money flowing toward a cure for T1.
So Juliet and 159 new friends will converge on Capitol Hill to try to persuade lawmakers to continue funding the Special Diabetes Program. The SDP provides $150 million each year specifically for Type 1 diabetes research, but the grant will expire this year.
Juliet said she was honored to be chosen as a delegate, but it wasn’t a cakewalk. Each applicant had to make a video, create three scrapbooks and send letters asking for meetings with the legislators from their states.
“We want them to put a face on Type 1 diabetes,” Jill Baum says.
Juliet also formed a team she called Sugar Mouse to walk in the JDRF One Walk, a fundraiser held at Mizner Park in Boca Raton in April. The Greater Palm Beach County chapter event raised more than $260,000.
Now Juliet is inviting everyone to send a message on her behalf and for 200,000 other kids living with Type I diabetes in support of funding the Special Diabetes Program.
It can be done online at www2.jdrf.org/site/advocacy?cmd=display&page=UserAction&id=514