3 area youth to attend diabetes gathering

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Three children from Fairfield County will represent the state at the annual Juvenile Diabetes Research Foundation Children's Congress in June.

Katherine Nickdow, 16, of Monroe; Emma Potvin, 9, of Trumbull; and Delilah Brien, 6, of Greenwich, will be in Washington to urge Congress to support funding for research into the condition. They will be joined by 150 other youthful representatives from throughout the United States, all of whom have the disease.

More than 1,500 children between 4 and 17 years old applied to take part in the JDRF gathering set for June 22-24. The congress has taken place on every odd-numbered year since 1999.

Nickdow, a junior at Masuk, was diagnosed with the disease when she was 12. "It was a complete shock to me, because I didn't have any of the usual symptoms," she said. "I'm in the school nurse's office every day ---- they're really great people and they really help me out a lot."

The teen, who said she has her heart set on attending the University of Virginia, is a member of the National Honor Society at Masuk and also is in her school's "Buddie's Club," in which she is paired with a youngster who is intellectually disabled.

Potvin, a fourth-grader at Booth Hill Elementary School in Trumbull, was diagnosed as an infant. Her parents say that she likes to go horseback riding and has supported the cause by participating in the annual JDRF Walk, and also has conducted tag sales and bake sales to raise money for the
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foundation.

"She doesn't really understand what life is like without the disease," said her mom, Amy. "It's always there. It basically affects everything she does. It's not something where you can say, 'I'm going to put this aside for the day.' "

Delilah's mom, Anastasia Brien, said that her daughter's disease can be managed, but only at great cost to the youngster's lifestyle. "We check her blood sugar 12 to 15 times a day with a finger poke," she said. "It's very, very challenging to maintain the proper blood sugar level in children."

She added that Delilah's blood sugar even has to be checked twice at night ---- at midnight and again at 3 a.m. She attends preschool at the Stanwich School, where the school nurse takes over the glucose monitoring duties.

She also said that she's happy George W. Bush is no longer president, owing to his long-standing opposition to stem cell research, one ray of hope for the sufferers of diabetes. "If this congress happened during the Bush administration, I wouldn't have gone ---- I wouldn't have bothered," she said. "It raises my blood pressure just thinking about it."

The congress will be led by actress Mary Tyler Moore, who also has the disease. Participants will attend a congressional hearing in which funding for research will be discussed.

Potvin and Nickdow belong to JDRF's New Haven County chapter; Brien is a member of the Fairfield County chapter.

According to the foundation, so-called "juvenile" or type 1 diabetes can strike at any age, although most of its victims are diagnosed when they are either children or in their teens. With type 1 diabetes, the pancreas stops producing insulin altogether, so its victims must rely on artificial insulin injections or an insulin pump in order to survive. There is no cure at present, and even the underlying cause isn't known, other than it's probably an autoimmune disease.