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South Shore girl, 13, to Lobby Congress; Juvenile Diabetes
By Michelle Hopey
The Patriot Ledger
20 June 2005
The Patriot Ledger
PLYMOUTH - Lauren Stanford had to stop eating ice cream, candy and birthday cake at age 6.
Instead of eating childhood delights, the Plymouth girl with juvenile diabetes began a lifetime of drawing blood, monitoring her blood sugar and giving herself insulin shots.
"With diabetes you never get a break," said Lauren, now 13, "I'm so sick of living with it, and I've only had it for eight years. I just want to be a kid."
Lauren will get her chance to tell Congress how living with Type 1 juvenile diabetes affects her and her family when she testifies tomorrow at a hearing about juvenile diabetes before the Senate Committee on Homeland Security and Governmental Affairs in Washington. Each day about 30 children are diagnosed with diabetes, according to the Juvenile Diabetes Research Foundation. More than 18 million people suffer from juvenile diabetes, known as Type 1, which is the leading cause of kidney failure, adult blindness, non-traumatic amputations, nerve damage, stroke and heart attacks. It also decreases life expectancy by 15 years. "We are going to tell them (senators) our story and get them to know what it's like to be a kid with diabetes," said Lauren, a seventh-grader at Plymouth Community Intermediate School. As part of the Juvenile Diabetes Research Foundation's Children's Congress, Lauren was chosen to speak at the hearing and represent all the children in the United States who have the disease. The Children's Congress is a biannual event that selects 150 diabetic children, ages 2 to 17, to be delegates at the four-day conference in Washington. Lauren and some other delegates will testify before Congress with notable speakers, such as actress Mary Tyler Moore, chairman of JDRF International; Douglas Wick, Oscar-winning movie producer; Gary Hall Jr., champion Olympic swimmer; and Dr. Allen Spiegel, director of the National Institute of Diabetes and Digestive and Kidney Diseases.
They are all expected to ask for more federal funding for research to find a cure for diabetes.
"I'm a little bit more excited than nervous," Lauren said. "I've done a lot of public speaking, but I'm nervous because this is a really, really big one."
Lauren has been in the political arena before. She testified before the Massachusetts Senate twice on stem cell research and once she testified about giving children the right to carry diabetes supplies in schools.
In 2003, she served as a Massachusetts delegate to the Children's Congress. As an 11-year-old, she helped pass the Pancreatic Islet Cell Transplantation Act and asked Secretary of Health and Human Services Tommy Thompson to help find a cure for diabetes.
At the end of the 2003 Children's Congress, the Stanford family - Lauren, her mother, Moira, her father, Sean, and sister, Leigh, 18, known for their advocacy work - was asked to be the Chair Family for the 2005 Congress. As chair family, they were in charge of planning and helping to select the delegates. "It's been an 18-month project," Moira Stanford said. "The hardest part was choosing the delegates. There were over 1,000 applications and 995 absolutely deserved to go. It was really hard. We had to look for compelling stories that would put together what Type 1 diabetes looks like in America."
The role as Chair Family also landed Lauren the opportunity to speak before Congress. Every year, the Chair Family's diabetic child, called the Chair Kid, is selected as the delegate to testify before Congress. It is the only way a child can participate in the event two times. Aside from speaking before Congress, which she calls the "coolest part" of her job, the Chair Kid is in charge of communicating with all the children delegates before the event. "I have to show everyone the ropes before we get there," she said. She has been hosting online chats and letters, and talked on the phone with many delegates. Government support is essential to finding a cure, Lauren said.
"Federal funding is one of the only things stopping a cure, that and stem cells. When we have a cure, we want everyone to be able to get it. I'm trying to help and make it happen," she said.
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