Winter Garden fifth-grader advocates for Type 1 Diabetes on Capitol Hill

WINTER GARDEN  Earlier this past week, Winter Garden resident Gabby Swart was one of the youngest people on Capitol Hill. 

She rubbed elbows with government officials and celebrities and lobbied for her cause. 

And, she’s only 10 years old.

Gabby, a rising fifth-grader at Whispering Oaks Elementary, is also a Type 1 diabetic. Diagnosed at age 7, it was hard for her to understand back then why she needed to continuously be poked and prodded, pricked with needles and monitored consistently. 

Now, she has better technology that can read her blood-sugar levels and alert her when they’re high or low. She has a better understanding of her disease. And, she’s constantly looking for new ways to spread awareness and promote research that will help boost better technology and one day find a cure. 

MEETING THE DECISION-MAKERS

Gabby recently attended the Juvenile Diabetes Research Foundation’s Children’s Congress in Washington, D.C. The event this year took place July 24 to 26, and more than 150 children with Type 1 diabetes nationwide were invited to gather to meet face-to-face with government officials.

The goal of Children’s Congress is for the kids to help members of Congress understand what T1D is and why research to further technology for those with T1D until a cure can be found is so valuable. 

“I’m going to talk to Congress, and we’re going to talk about laws that affect Type 1 and renewing in September the Special Diabetes Program, where they give $150 million a year to cure research,” Gabby said before she left.

Otherwise known as the Special Statutory Funding Program for Type 1 Diabetes Research, SDP appropriates funds for research on the prevention and cure of T1D. It is administered by the National Institute of Diabetes and Digestive and Kidney Diseases, on behalf of the secretary of the Department of Health and Human Services. It’s up for renewal in September — and members of Congress will vote on that renewal.

“We’re asking for a renewal of three years — right now the proposed budget is two,” Gabby’s mother, Erika Swart, said. “The government gives $150 million per year directly to Type 1 research, cure funding, technology funding, prevention funding, things like that. It started in 1997 and since then we’ve seen an explosion in the world of Type 1.”

In the world of technology for T1D, many doors have opened in recent years. Gabby has a continuous glucose monitor, which goes under the skin and tests her blood sugars every few seconds and reads an average number every three to five minutes. It allows her and her parents to watch her trends and see if she’s running high or low. It also connects to the family’s smartphones via Bluetooth.

“That’s one of the neat things about the research and funding they do,” said Bryan Swart, Gabby’s father. “The scariest time is at nighttime — you can’t really see what her blood sugar is and the trends. Until (we got the CGM), we got up every two to three hours to check her blood sugar.”

“The concept of a cure is a little bit further out, so while we definitely want to fund cure research at the same time we want to fund technology and improve life along the way before we get to a cure,” Erika Swart added. “(SDP) funds about one-third of this type of research. It’s a big deal that it’s up for renewal.”

GIFT OF GAB

Gabby previously served as a Youth Ambassador in 2016 for JDRF, and was chosen out of a pool of about 1,500 applicants to be a member of Children’s Congress this year. She first decided she wanted to spread awareness of T1D two years into her diagnosis, after watching her friend get up in front of an audience and tell her story.

“She’s always been very outgoing and extroverted, which is my complete opposite,” Erika Swart said. “We went to a fundraising rally, and a girl on stage gave her story, and Gabby was like, ‘I want to do that; I want to give my story.’ She’s so outgoing and likes to perform, and I was thinking, I don’t think she knows what this is.

“I want to let people know that even if I have this disease I can do much more than they think I can.” — Gabby Swart

“I told her that the job of the Youth Ambassador is to raise awareness and work with the corporate sponsors — thanking them, encouraging and giving them ideas,” Erika Swart said. “It’s really a hands-on way for them to see where their money and efforts are going.”

Gabby’s extroverted nature and willingness to share about her life make her a perfect ambassador.

“Sometimes, it’s kind of confusing when I explain (T1D) and they (people) have no idea what this is,” Gabby said. “I feel like it’s good that I’m telling them, because I want to spread an awareness and let people know that I have it. I like when people ask. When I first got to cheerleading a couple weeks ago, they asked what it was, and I told them, and they were inspired.”

Gabby’s had a lot of looks, stares and comments about her pump and her T1D in the past, but she’s learned to have thick skin and push for change, awareness, continued funding and making a difference.

“Having Type 1, when I first got it, I thought I could do nothing and that I couldn’t do anything my friends or sisters could do,” Gabby said. “I can do anything I want; I just have to check my blood sugar first and make sure my pump settings are OK. I want to let people know that even if I have this disease, I can do much more than they think I can. I want them to know that I get out there and do stuff and I’m like them.”

“As her parents we’re just really proud of her,” Bryan Swart said. “She’s not just sitting back — she really is a mighty voice just to spread awareness and make people aware. She CAN do everything.”