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Learning To Live with Diabetes

Six-year-old Kevin Sobhani is the only student at Herndon Elementary School with type 1 diabetes.

Backpack — check.

Back to school clothes — check.

Insulin shot, blood sugar meter and special medical forms filled out — check.

For six-year-old Kevin Sobhani, planning for the first day of school is more than just buying new clothes and school supplies.

After falling into diabetic coma as an infant as a result of a dangerous state of insulin deficiency, Kevin was diagnosed with type 1 diabetes before his first birthday.

"It's boring, I don't really like it," said the green-eyed six-year old from his living room this summer. "You can't always eat whatever you want."

Kevin is the only student at Herndon Elementary School with type 1 diabetes, said his mother, Dori Sobhani.

"It was a real concern," she said about her son's year in kindergarten last year, the first he attended the school. "But, it went really well so I am not as worried this year."

Because her son was the only student to have type 1 diabetes, the school's teachers and nurses had to take required training courses to be able to properly give him his shots, test his blood sugar and, most importantly, identify his highs and lows.

"If he's low and they don't notice it, it could get serious very quickly," Sobhani said a month before the start of school. "I have a one-page sheet that I will be giving his teachers about what to look for and what to do."

APPROXIMATELY ONE in every 400 to 500 children and adolescents has type 1 diabetes, according to the American Diabetes Association.

Type 1 diabetes is usually diagnosed in children and young adults and was previously known as juvenile diabetes. In type 1 diabetes, the pancreas does not produce insulin, the hormone that enables people to get energy from food.

In type 2 diabetes, the more commonly known type, insulin is made in the body, but people with the disease do not respond well to it. Some people with type 2 diabetes have to take diabetes pills or insulin shots to help their bodies use glucose for energy.

In Kevin's case, he depends on the insulin to live.

"Insulin is not a cure," said Sobhani, "it's day-to-day to survive."

Because her son will depend on insulin injections for the rest of his life — and have to monitor his sugar intake depending on how much food he eats or how much energy he uses — Sobhani has found herself wanting better research on type 1 diabetes and its complications.

"It was totally overwhelming," she said about her reaction to her son's diagnosis. "At the beginning we went through the anger and then the denial, we thought 'this is something he can get over.' But then it hits you, this is long-term until they find a cure."

The long-term complications of type 1 diabetes include blindness, heart attack, kidney failure, stroke, nerve damage and amputations, according the American Diabetes Association.

While insulin shots help people with type 1 diabetes control blood sugar levels, those levels have to be constantly checked because low blood sugar reactions — hypoglycemia, and high blood sugar reactions — hyperglycemia, can be deadly.

Kevin checks his blood sugar at least four or five times a day.

"You live in the moment with diabetes," Sobhani said. "If you start worrying about the future, then it gets overwhelming."

SINCE 1999 the Juvenile Diabetes Research Foundation has held an event every two years called Children's Congress. Through this event children with type 1 diabetes from across the country are selected to be delegates to lobby on Capitol Hill and gain congressional support for increasing research on type 1 diabetes.

Kevin was one of the 150 children selected to advocate on behalf of other children with type 1 diabetes.

"It put a face onto the disease so they remember them when they're voting," said Sobhani. "We really do need to call our representatives and say that we need their support. I came away feeling like we were making a difference."

During the four-day event the children participated in numerous activities on Capitol Hill. Alongside Mary Tyler Moore, JDRF's international chairman, some of the delegates joined researchers, business and community leaders before the Senate Committee on Homeland Security and Governmental Affairs to discuss the need for continued funding for research on type 1 diabetes.

"I never thought I'd be doing this, but you have to be an advocate," Sobhani said about her family's involvement. "You have to go out and do this."

During the dinner banquet, children from across the country with type 1 diabetes were recognized. When he realized what was going on, Kevin looked at his mom and said, "I didn't know anybody else had diabetes." Because he is so young, Sobhani said it is hard for her son to understand the full impact of the disease.

"He's been checking himself at camp, but we still have to train people to watch for symptoms," she said. "It has to become a part of your daily routine, you have to work it into your schedule."

"IT'S KINDA HARD having a little brother with diabetes and you want to go somewhere," said Delana Sobhani, from the rocking chair in her living room, "because you always have to wait."

Sobhani said that even though she considers it a pain, her daughter was a great help during the summer while Delana and Kevin were at various camps and the adults did not always remember to check Kevin's blood sugar levels.

"I help out if an adult doesn't know how to check him," nine-year-old Delana said. "I help prick and get blood, and I can read his numbers. If he's over 200 he's high and if he's under 90 he's low."

Even at six years old, Kevin is cognizant of the importance of checking his blood sugar levels, but is still too young to notice the changes in his behavior are usually related to those levels.

And, as an active child — he plays soccer and t-ball — his levels need to be checked more often.

"It's boring," he said again about having diabetes. "Sometimes [the insulin shot] hurts, but my dad puts ice on it before he does it so it doesn't hurt."

When he returns to school, this time as a first-grader, Kevin will tell the same stories as his classmates about his summer filled with swim meets and various summer camps. And although he may talk about the Children's Congress and the friends he made, the numerous insulin shots and the hundreds of blood sugar pricks he took this summer will be forgotten.

"Unfortunately the hard part is you have diabetes every day, every year," Sobhani said. "But, you can't let it stop you ... it has to be a part of his daily routine."