Winchester Youth Speaks About Diabetes

Jackson Savage was one of about 150 children throughout the United States that was selected to represent his state on Capitol Hill in June.

The children - aged four to 17 and representing all 50 states and the District of Columbia - converged on Washington, D.C. to talk about the challenges of living with type 1 diabetes to lawmakers during the Juvenile Diabetes Research Foundation's (JDRF) Children's Congress 2011, from June 20 to 22.

"Having type 1 diabetes means feeling lousy even when you do everything right to keep your blood sugars in range,” said Savage, who is nine-years-old. “It means having to keep glucose tablets everywhere - in the player's box at hockey, on the sidelines at soccer, and in my father's bag at lacrosse and baseball, in case I get low.

Savage, who lives in Winchester, was named one of four delegates representing Massachusetts in the JDRF’s Children's Congress.

“High blood sugar gives me a headache and a stomach ache, and sometimes it just happens for no reason, like if I'm growing, or I get nervous or excited,” Jackson said. “We work really hard to raise money for Team Jackson in the Boston Walk to Cure Diabetes, money that will go toward the scientists who are searching for a cure for my disease.  I'm going to tell Congress that they need to keep funding the cure, because more kids are getting it every year and I don't want them to have it."

The event, held every other summer, was be led by JDRF's International Chairman Mary Tyler Moore, and included Congressional visits by the child delegates and a Senate hearing during which Moore, select delegates, researchers, and business and community leaders will testify on the need for continued funding for type 1 diabetes research, under the theme of "Promise to Remember Me."  

"All of the children and their families can confirm with me that type 1 diabetes tests our will and determination to live a normal life," said Moore, who has had type 1 diabetes for about 40 years.  "With JDRF's Children's Congress, we are able to put faces to a disease that places an enormous toll on our nation. It is also a reminder for Congress that their partnership in the fight to find better treatments and a cure for type 1 diabetes is essential and has helped to drive research progress to date."

Savage was diagnosed with type 1 diabetes in November 2005 when he was three years old. The day-to-day fight to stay alive has been a struggle for him and his family.

"Jackson's pancreas shut down when he was three,” said Kim Savage, Jackson's mother. “Since then, my husband and I have become his pancreas, calculating the carbohydrates he'll eat, the energy he'll expend, and giving him titrated insulin through a needle under his skin that we change every three days. Kids like Jackson must be vigilant of coma-inducing blood sugar lows, day and night, for the rest of their lives - lives shorter than average by about 15 years.  But, Jackson never complains.” 

"His role models are elite athletes with type 1 diabetes, like Denver Broncos Quarterback Jay Cutler and Olympic swimmer Gary Hall Jr. He plays harder than ever, barely stopping to rip off his insulin pump (for the maximum 90 minutes) before jumping onto the ice or the field. At times, though, his soul seems weary, aged by the thousands of finger sticks he's endured over the last six years. Lawmakers must understand what kids with type 1 diabetes endure, how close a cure is, and how their support will fund the research that will get us there."

To learn more about JDRF's Children's Congress, please visit the Children's Congress web site at http://cc.jdrf.org.