Since being diagnosed with Type 1 diabetes five years ago – on her second day of second grade – the Lexington Middle School seventh-grader has tried to lead as normal a life as possible. But doing that has often presented its challenges.
“There is nothing normal about having to check your blood sugar before every meal or snack, when you feel low or high, or when you are sick,” she said. “There is nothing normal about having to think about every morsel of food that you decide to eat and determine how many carbohydrates it has.”
Hannah’s list goes on, but she’s hoping that routine can one day be eliminated for her and thousands more like her. The 12-year-old will get to express her concerns in a combined voice before a special audience next week. She is one of three delegates selected to represent South Carolina at the Juvenile Diabetes Research Foundation’s 2013 Children’s Congress.
Twelve-year-old Justin Schur of Simpsonville and 15-year-old Ethan Morse of Fort Mill also will be a part of the South Carolina delegation. The three will join 150 others between 4 and 17 years old from the 50 states and the District of Columbia during the visit to the nation’s capital.
While on the three-day trip, the young people will urge members of Congress to continue supporting research to reduce the burdens of those living with Type 1 diabetes while also continuing to push for a cure. Until one is found, Hannah hopes the current burdens are never taken for granted.
“I would like to tell Congress that even though you end up getting used to it, I would never wish this upon my worst enemy,” she said. “The effort it takes and the madness it gives is why I want a cure.”
The Children’s Congress is held every other summer and will again be led by JDRF International chair, Mary Tyler Moore. It will include congressional visits by the delegates and a Senate hearing in which Moore and select delegates and advocates will testify on the need for continued funding for research.
The delegates were selected from a pool of nearly 1,500 applicants who have the disease.
“The JDRF Palmetto Chapter is very proud to be represented by Hannah, Justin and Ethan at the 2013 Children’s Congress,” said Dana Bruce, executive director of the Palmetto Chapter of JDRF. “Their efforts and dedication in raising awareness of what is it to live day to day as a Type 1 diabetic is inspiring.”
The Children’s Congress was inspired by then-8-year-old Tommy Solo from Massachusetts in 1999. He overheard adult JDRF volunteers talking about going to Washington, D.C., to talk to Congress, and thought it would be great if children could go, too, because their voices also needed to be heard. Since then, there have been six more Children’s Congresses.
Hannah said she wants other children living with Type 1 diabetes – and their families – not to lose hope while a cure is sought.
“I would like to tell the families that it does get better even though diabetes will give you a run for your money,” she said. “You end up getting used to the highs and lows, and treating them will come naturally.”