Two local youth are prepared to don ties and walk the steps of Capitol Hill this week, as they join additional youth chosen to meet with lawmakers and give a face to childhood Type 1 diabetes (T1D).

The Children’s Congress began in 1999. Every other year, more than 160 children living with T1D gather in Washington, D.C., to tell members of Congress about life with T1D and explain why research to fund life-changing therapies and potential cures is critical.

The two youth from our area selected include Ian, 9, and Luke, 14, Sarver.

According to their mother, Malissa Sarver, who is an advocate for diabetes awareness, “Type 1 diabetes is an autoimmune disease in which the pancreas stops producing insulin. People with Type 1 require insulin to stay alive. While it was traditionally called Juvenile Diabetes, because people were typically diagnosed as children, over around half of new diagnoses are in people over age 30. And, despite the ‘juvenile’ reference, people have Type 1 diabetes for life at this point. 85% of people living with the disease are adults and diagnoses are increasing.”

The JDRF is the world’s largest charitable funder of T1D research. Its goal is to foster an environment where a world without diabetes is possible. The mission has two parts: curing Type 1 and improving lives.

The Sarver Family will be meeting with lawmakers alongside 160 additional youth who were selected for the program in hopes of showing the impact diabetes has on their life and advocating for the Special Diabetes Program.

According to Malissa Sarver, The Special Diabetes Program (SDP)is a long-standing program, created in 1997. It provides $150 million of research funding per year to scientists per year and has significantly improved the lives of people living with Type 1 diabetes. Research funded by the SDP has led to continuous glucose monitors, closed loop insulin pump systems and most recently, the first preventive therapy for T1D.

Malissa Sarver expanded on the importance of insulin, saying that insulin has become overwhelmingly expensive for many in the diabetes community.

According to JDRF, the organization is still supporting the INSULIN Now Act that has been introduced in the U.S. Senate. Things that would help include ensuring insurance plans and pharmacy managers cannot collect rebates, which makes up 70 percent of the list price of insulin today; establishing a $35 monthly cap on the out-of-pocket cost of insulin; and removing insulin from annual deductibles. Patients would enter a copay relationship for it right away.

Ian Sarver was diagnosed with T1D at age one and has been living with it his entire life. He attends Notre Dame Schools, where he is an excellent student going into the fourth grade, and enjoys tennis, music, and theatre.

Ian says that language arts is his favorite subject, and he is currently writing a book called ‘The Mystery of Frankie.’

“I want people to know that people with Type 1 diabetes can do anything; well, except make insulin,” Ian Sarver said. “I think it’s important for people to understand the signs of Type 1 diabetes. I also think it’s important to continue funding for more technology and a cure for Type 1 diabetes.”

Ian and his family got involved with JDRF and the T1D community right after he was diagnosed, and they have worked to raise awareness and drive research ever since. Ian has been interviewed on the radio and spoken to a college class. The Saver family started a support group, Ohio River Valley T1D, that hosts a free day camp for children living with T1D in the summer.

“I am looking forward to meeting other kids with Type 1 Diabetes, talking to congress and seeing DC for the first time,” Ian Sarver said. “I really want to see the Capitol, because not a lot of people get to. I think it is impressive that Congress works there.”

When he grows up, Ian said, “I want to be a pediatrician because I want to help children feel better.”

Ian said that, of his extracurriculars, tennis is his favorite, because he compares it to his T1D diagnosis.

“It is kind of like my insulin,” Ian Sarver said. “When I play tennis, I am supposed to let the racket do the work instead of me doing the work, kind of like how I need insulin to do its work instead of my pancreas.”

After Ian was accepted to attend the Children’s Congress this year, his elder brother, Luke, was diagnosed with T1D as well. In fact, his diagnosis is only weeks old, but he has been living the T1D life for eight years, being a supportive big brother to Ian. The young man was invited to join his kid brother in DC and was made a member of the Children’s Congress as well.

Luke is a freshman at Wheelersburg High School, where he spends his free time running for Cross Country and Track.

“Apart from being really good for how I am at it, I really enjoy running,” Luke Sarver said.

The young teenager says the diagnosis was a surprise, but a surprise that he doesn’t plan on letting rule him.

“I think it is a big shock for me, but I’m also not too surprised, because my brother has it and my dad’s family has a history,” Luke Sarver said. “I was really worried about how it would impact my ability to perform in sports, but I plan on continuing.”

Luke said he was scared to learn of his T1D, but feels comforted with his mother’s background in the issue.

“I feel really supported going into this,” Luke Sarver said.

Luke is most excited about seeing the history, monuments, and meeting lawmakers.

“I am really excited to go to Congress. I hope to accomplish something similar to what my brother wants; putting a face to Type 1 and bring it to a human level and telling the experiences of having Type 1,” Luke Sarver said. “I think it is important, so lawmakers know, on a human level, what this funding supports. It goes towards research and expanding to more research.”

Malissa Sarver is excited for her children and the opportunity they have this week. That excitement is based on pure pride for the people they’re becoming.

“I’m really proud of them and admire all of the things they don’t allow diabetes to stop them. Luke was only recently diagnosed and was in the hospital,” Malissa Sarver said of her children. “Three days later, he was back at Cross Country practice and then a week later ran a 5k and made it in 23 minutes. Ian does children’s theatre and piano and tennis. There may be more steps in the things you have to do to manage, but they do it. Their drive is admirable.”

Reach Joseph Pratt at (740) 353-3101, by email at [email protected], © 2022 Portsmouth Daily Times, all rights reserved