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The Honolulu Advertiser

Posted on: Monday, June 20, 2005

Dayna's dream team

By Michael Tsai
Advertiser Staff Writer

Pity the poor politico who tries to dance around Dayna Akiu and her peers next week.

Dayna Akiu, 13, of Salt Lake, practices her soccer moves at a neighborhood park.

Rebecca Breyer • The Honolulu Advertiser

The 13-year-old Kamehameha Schools student is one of 150 kids from around the country who are traveling to Washington, D.C., to lobby Congress for continued funding for research into type 1 (juvenile) diabetes.

And sure as her next insulin infusion, Dayna won't be taking "um" for an answer.

"So what'cha say, Sen. Fatcat? Can we put your committee down for a few hundred million?"

"Well, Dayna, we're sympathetic to your cause, but our budgetary constraints ... "

"Hey Senator, wanna see my fingertips? Neat, huh? You don't get calluses like these juggling pork barrels. No sirree, try pricking yourself with a needle a dozen times a day to check your blood sugar."

"Lovely, Dayna. But ... "

"Let's see, that's got to be, what, close to 20,000 needle pricks since I was first diagnosed ... AT AGE 5!"

"Goodness, look at the time ... "

"Of course, those finger pokes aren't nearly as irksome as the 9,000-plus insulin injections I had before I got my insulin pump ... "

"Lookee here, logo items! Want a pen, Dayna? How about a Tom DeLay bobblehead?"

"Yeah, thank goodness for the insulin pump. Now, all I have to do is change my infusion set every three days. Hey Senator, wanna see my catheter?"

"Security!"

O.K., the kid is way too well-mannered to give Congress and the administration the wake-up call they need. But soft-spoken though she might be, Dayna will get her message across. Count on it.

Dayna shows off her insulin pump, a device that delivers a steady dose of insulin into her bloodstream through a catheter in her hip.

Rebecca Breyer • The Honolulu Advertiser

"I don't want diabetes," Dayna said, explaining why she's making the trip. "I want to find a cure."

The Juvenile Diabetes Research Foundation's Children's Congress convenes every other year. Led once again by she "who can take a nothing day and suddenly make it all seem worthwhile" — that's Mary Tyler Moore, Gen-Y-ers — the delegates will meet with select congressmen and make their case before a hearing in the Senate Committee on Government Affairs.

Dayna isn't required to do any speaking herself — five other delegates have been tabbed for testimony — but her face will be right there with her type 1 peers for all those senators and representatives to remember when it comes time to allocate money.

To be sure, the talking points are compelling enough no matter who delivers them. Consider:

I There are 1.3 million Americans with type 1 diabetes (35 children are diagnosed every day).

I People with type 1 need to take insulin every day to survive.

I Insulin helps on a day-to-day basis, but it's not a cure and it can't prevent kidney failure, blindness, nerve damage, amputations, heart attack, stroke and other complications.

I Diabetes was the sixth leading cause of death listed on U.S. death certificates in 2000, although the actual number of related deaths is believed to be significantly underreported.

Hawai'i's congressional delegation also might take note that Native Hawaiians, Pacific islanders and Asian-Americans are, in general, twice as likely to develop diabetes. According to data collected by the Hawaii Medical Service Association, about 2,300 people on O'ahu have type 1 diabetes.

Dayna has heard all of this before. Her mom, Dena, first became concerned early in summer 1996 when she noticed the 5-year-old drinking and using the bathroom excessively. By October, Dayna had begun losing weight.

"We took her to the doctor, and that night she started showing symptoms," Dena says. "She got bloated and she threw up."

Dayna's mom, Dena, recalls hospital stays in 1996 when her 5-year-old daughter was diagnosed with type 1 diabetes. "When I first heard 'diabetes,' I realized that I didn't know the first thing about it," Dena said.

Rebecca Breyer • The Honolulu Advertiser

The lab results showed elevated sugar levels. Warning bells typically go off when a fasting plasma glucose test returns a score of 126 mg/dl or higher or when an oral glucose tolerance test shows 200 mg/dl or higher. Dayna's reading, Dena recalls, "was in the 900s." Dayna was admitted to the pediatric intensive-care unit and remained in the hospital for a week.

At home, Dena and husband, Ed, struggled to wrap their minds around the implications of Dayna's diagnosis. No one in their family was diabetic, and yet now their daughter was facing a lifetime of finger pricks, insulin injections and careful diet monitoring.

"When I first heard 'diabetes,' I realized that I didn't know the first thing about it," Dena says.

Turns out none of it would slow Dayna down. With the help of the Juvenile Diabetes Research Foundation, they learned ways to manage Dayna's diabetes. Within a year, Dayna had taken up soccer and was doing all of the other things kids her age enjoy.

Dayna still plays soccer for Kamehameha Schools and the Real Hawaii Futbol Club of the Hawaii Youth Soccer Association.

Which is not to say that living with type 1 diabetes is easy.

"When I feel weak, I get really dizzy and I have to come out (of the game)," she says. "When I feel high (hyperglycemic), my heart beats really fast and it's hard to get my breath."

The insulin pump, a beeper-sized device delivering a steady infusion of insulin into Dayna's bloodstream through a catheter in her hip, has made things easier. But easy is a relative concept for someone who still has to keep close tabs on her blood-sugar levels and make sure the pump (as much as $6,000) is working properly.

Every year, Dayna and her family and friends mobilize for the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes, raising as much as $5,000.

"Dayna is just delightful," says Manya Levin, the foundation's executive director.

Levin says grassroots advocacy has led to greater awareness and more productive fundraising. Hawai'i, she says, "is particularly generous."

The foundation, which distributes funds internationally for aggressive, promising research, also has benefited from embryonic stem cell research, Levin said.

Dayna says she wants to be an actress like Halle Berry (who also has diabetes) or maybe a dolphin trainer at Sea Life Park. In the short term, she'd settle for a day when she didn't have to prick her finger and smear blood on a little test strip, or slide a needle into the catheter in her hip.

And so, young Ms. Akiu goes to Washington.

Reach Michael Tsai at mtsai@honoluluadvertiser.com or 535-2461.

• • •

Do you have diabetes?

Of the estimated 18.2 million people in the U.S. who have diabetes, nearly one-third are unaware they have the disease.

If you suspect you have pre-diabetes or diabetes, talk with your doctor. A fasting plasma glucose test or an oral glucose tolerance test can tell you for sure.

Common diabetes symptoms:

• Excessive thirst

• Frequent urination

• Drowsiness

• Sudden vision changes

• Increased appetite

• Sudden weightloss

• Fruity, sweet or wine-like breath

• Heavy, labored breathing

• Stupor, unconsciousness


On the Web

American Diabetes Association (www.diabetes.org): Comprehensive information including a learning center for the newly diagnosed, a risk test, statistics and myths

Juvenile Diabetes Research Foundation International (www.jdrf.org): Information and support specific to type 1 diabetes, including management tips, research news, an online support team, diabetes in schools, traveling with diabetes, personal stories and JDRF Kids Online