Will DeMeritt has a cat named Squirrel.
That sense of humor is one of his many endearing qualities.
“Will is smart, funny, and caring,” said his mom, Jen. “He’s super independent, a confident leader, and enjoys helping others.”
Now 13-years old, Will was diagnosed with type 1 diabetes (T1D) seven years ago. It was a diagnosis compounded with another health challenge: Will was born deaf.
Overcoming Unique Challenges
Being a deaf child with T1D means more hurdles to overcome, both for Will and his parents, Jen and Derrick.
“Learning about himself and his diagnosis was a process,” Jen said. “It has been difficult to find caregivers—from teachers to doctors to camp counselors—that can not only communicate with him in his primary language of American Sign Language (ASL), but also understand the medical care he needs.”
Navigating a social life has also been tricky for Will. Despite having many friends, his T1D friends aren’t deaf, and none of his deaf friends have T1D. He often needs to explain how he is feeling more than most teenagers.
“His peer group is made up of friends without T1D that do try to understand,” Jen said. “And recently he has been able to stay connected with peers from diabetes camp through technology.”
Jen and Derrick were accustomed to advocating for Will as a deaf child—adding T1D to the mix was overwhelming. But JDRF stepped in to support them. “JDRF let us know there is an army of T1D warriors walking this journey with us and pushing for a cure,” Jen said.
When the DeMeritts saw an announcement from JDRF about the 2019 Children’s Congress, they saw it as an opportunity for Will to meet other kids with T1D, learn more about the disease, and help inspire others. They were thrilled when Will was selected to be a Delegate.
“The interactions with the elected officials and the JDRF Congress Delegates were amazing to watch,” Jen said. “Through Will’s ASL interpreters he told them his story and they gave him 100% of their attention.”
For Will, his favorite part was talking to people with T1D, just like him.
“I loved meeting all the celebrities with T1D,” he said. “And when I met Representative Elissa Slotkin, I asked her to support us in finding a cure!”
JDRF 2023 Children’s Congress will take place July 9-11, 2023—the first time it is being held since 2019 due to the pandemic. The excitement is building in JDRF Advocacy, with an event schedule already packed with educational sessions, social events, and a Senate hearing.
“Children’s Congress is truly a once-in-a-lifetime opportunity for kids with T1D,” Purdy said. “Seeing the Delegates feel a sense of empowerment and learn to use their voices is just incredible.”
JDRF 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
A Dreaded Diagnosis
In 2020, at the height of the COVID-19 pandemic, Will’s twin sister, Mikaila, started feeling unwell. They scheduled a doctor appointment, but after she complained of thirst and dizziness, Derrick decided to check her blood sugar with Will’s glucose monitor. It was over 600. After a conversation with Will’s endocrinologist, they started her on insulin that night.
“That was the harder diagnosis,” Jen said. “She knew what T1D was and every year at her annual physical would always get so scared when they checked for sugar in her urine.”
The DeMeritts tackled the all-too-familiar challenge the only way they knew how: with resilience and with love.
“There was a lot of fear, anger, and frustration,” Jen said. “But Will helped Mikaila feel better. He shared tricks he had learned and even practiced giving saline shots to an orange with her!”
A New Outlook
JDRF Children’s Congress helped Will develop a new, more positive outlook. “When I was first diagnosed with T1D, I totally hated it,” he said. “I am finally alright about it.”
His parents agree.
“Being an Advocate helped Will realize he wasn’t alone,” Jen said. “He became more confident in talking about his feelings about T1D and the effect it has on him.”
It’s that sense of empowerment and community that draws thousands of applicants to Children’s Congress every year. Will can see why.
“It helped me find my voice,” Will said. “JDRF Children’s Congress changed my life.”
JDRF 2023 Children’s Congress Delegates will be announced in March 2023.