If you think one voice can’t be heard in Washington, don’t tell Shelby Roberson.
When Shelby was diagnosed with diabetes five years ago, she longed for a cure—not only for herself, but for others struggling with diabetes—so she took action. She wrote to her congressional representative and encouraged others to do likewise, she traveled to Washington, D.C., to attend hearings on diabetes funding, and she’s a frequent participant in fund-raisers.
And she’s just 10 years old.
Indeed, Shelby Roberson’s campaign for a cure for diabetes has made the fifth-grader one of Montana’s youngest lobbyists, taking her from the classrooms of her elementary school to the corridors of Congress.
Shelby believes in the influence of young voices. That’s why this amazing girl educates other children about diabetes, persuading them to ask their political leaders to support additional funding for diabetes research so other kids won’t face the struggles she has known.
Working for a cure
When Shelby was diagnosed at age 5 with juvenile, or Type 1, diabetes, the little girl from Lincoln, a western Montana town of 1,100, faced constant reminders of her illness.
“She would ask, ‘Why do I have to stop when everyone else is playing?’ to take glucose, or drink juice, or check blood sugar level,” says Lisa Roberson, Shelby’s mother.
The answer is that in Type 1 diabetes, usually diagnosed in children, the body makes no insulin, a hormone essential for allowing glucose to move from the bloodstream into body cells for energy.
The cause of juvenile diabetes is not completely known, although researchers believe the body’s own immune system attacks and destroys insulin-producing cells in the pancreas.
Juvenile diabetes differs from Type 2 diabetes, also known as adult-onset diabetes, because with Type 2, the pancreas initially produces adequate insulin to maintain normal blood sugar. But the body’s cells over time do not use the insulin efficiently—because of obesity, a sedentary lifestyle, older age, race and ethnicity, or a family history of diabetes—so the pancreas becomes overworked and unable to produce as much insulin as it once did.
Soon after her diagnosis, Shelby’s activism took root. She wrote to then-U.S. Congressman Rick Hill of Montana and learned firsthand that lawmakers will listen to children.
“It is not enough to learn to live with diabetes; we have to find a cure,” she said in that first letter, written when she was just 6. “My mom and dad take great care of me, and they are teaching me to do the same, but great care doesn’t guarantee that I won’t have eye, kidney, or nerve damage in 20 years.
“This will be the prime time of my life. Maybe I won’t be able to have children. A cure is the only guarantee that I pray for.”
Aided by her powerful letter, Shelby was chosen in 1999 as Montana’s representative to the first Juvenile Diabetes Research Foundation’s Children’s Congress in Washington, D.C.—a forum where children, ages 2 to 17, and their parents meet with their congressional representatives and then gather at a hearing to answer questions from congressmen. Children testify along with other voices behind the disease; actress Mary Tyler Moore, who has juvenile diabetes, testified at the 1999 event.
Children’s Congress, held every other June, focuses on one diabetes-related issue each time to bring before the U.S. Congress. The year Shelby went, that issue was National Institutes of Health funding.
Again, Shelby saw that lawmakers would listen to children. “Children’s Congress has a great impact on senators and representatives,” Shelby says. “It’s amazing for them to see over 100 children sitting on the floor. It’s a pretty awesome sight when every piece of floor is taken up by kids.”
Meeting Shelby was a moving experience, former Congressman Hill recalls. “People in Congress often become detached from the issues they’re debating,” he says. “These children really put a face with the issue. It keeps people in Congress attached to the people they’re serving.”
He always supported diabetes research, Hill says, but meeting with the youngsters helped reinforce not only his own convictions, but also those of his colleagues.
No ‘stumbling block’
Children’s Congress was a turning point for Shelby. “Before meeting the other kids at Children’s Congress, I felt like I was the only one with diabetes,” Shelby says. “Now, there is another kid at school with diabetes, and I have met many other kids by going to meetings with my mom.”
Her mother also experienced a moment of truth in Washington. “I knew then (at the Children’s Congress) that I wanted to get rid of this terrible disease,” Lisa Roberson says.
So she became the diabetes foundation’s Montana state leader for government relations, attending meetings statewide—accompanied by Shelby—and traveling to Washington, D.C., at least once a year to lobby. “Our goal is to reach out to people in different cities across the state and generate volunteers who are passionate about finding a cure and not just living with it,” she says.
Shelby, at her tender age, helps the cause in the way of a youngster, and she isn’t shy about spreading the word on diabetes. She captivated her classmates when she encouraged them to write Congress, teacher Kris Jacobsen says.
“I was amazed how well she could describe it (diabetes),” Jacobsen recalls.
Shelby has explained to her young school friends about her daily care routine. “The hardest thing about having diabetes is the shots, pokes, high, and low blood sugar,” she says. “And I want to be like other kids.”
She regularly participates in the annual Walk for Diabetes held in Missoula. Last September, with a little help from her classmates, Shelby raised $3,700 of the $37,600 raised by walk participants.
And after the event, Shelby sent a picture of her and walk teammates to Montana congressmen. “It’s a way to remind them: Here’s what we did to find a cure,” she says. “Pictures make a big impact.”
Shelby and her mother also are promoting the “Bag of Hope Program,” in which educators at a Community Medical Center in Missoula help link newly diagnosed children and their parents with volunteers who offer support, understanding, and a bag of goodies and information about diabetes. The bag contains stickers, glucose tablets, toy animals, a cookbook, and videos. Though Bag of Hope is available only at the Missoula hospital, the Robersons are urging other hospitals statewide to participate.
“When dealing with a health issue 24 hours a day, it’s nice to have someone in your corner,” Lisa Roberson says. “When it’s new to you and your child is sick, you don’t know what to do. This is the best gift anyone could give us.”
When she’s not campaigning for a cure, Shelby refuses to let diabetes limit her fun. She loves to ride her bike, four-wheeler, and kid-sized motorcycle, fish, ski, and play with her younger brother, Ward.
If she’s not outdoors, Shelby curls up with her favorite Hank the Cowdog books, tunes in her favorite television program, Reba, and enjoys slumber parties with friends, shopping, and listening to music.
“Jay (Shelby’s father) and I encourage Shelby to be active,” Roberson says. “We want her to grow up knowing that diabetes does not have to be a stumbling block.”
And someday, they believe, Shelby and others will live free of the disease.
New Research Brings Hope
Nearly 1 million of the 10.3 million people diagnosed with diabetes have juvenile or Type 1, the Juvenile Diabetes Research Foundation estimates. Another 5.4 million people have Type 2 diabetes but have not yet been diagnosed.
Recent breakthroughs in juvenile diabetes research offer new hope for a cure, says Lawrence Soler, director of government relations for the Juvenile Diabetes Research Foundation.
Researchers are successfully transplanting insulin-producing islet cells from donor pancreases into adults with longtime juvenile diabetes, restoring normal blood-sugar levels, according to the foundation.
Of some 70 transplants done since 2000, about 85 percent were so successful that recipients no longer needed insulin injections, though they must take immunosuppressant drugs to prevent transplant rejection.
Still, the drugs remain too risky for children, though, joint research by the diabetes foundation and the National Institutes for Health is aimed at developing new non-toxic approaches to immune tolerance.
“The transplantation of insulin cells is the future,” Soler says. “We have shown that this can be a curable disease.”
To learn more about diabetes, or to volunteer, contact the Juvenile Diabetes Research Foundation at (800) 533-2873, or log onto www.jdrf.org.