Special to the Star-Bulletin
Natalie Benjamin, center, will attend the Juvenile
Diabetes Foundation Children's Congress in Washington, D.C.
Young diabetic is
brave beyond years
A Niu Valley girl will take
By Helen Altonn
her message of hope for a
cure to Washington, D.C.
Star-BulletinEight-year-old Natalie Benjamin starts each day with a poke and a shot.
A poke to test her blood sugar. A shot of insulin to stay alive.
Natalie has diabetes and she's going to Capitol Hill with a personal message for Congress.
"I want a cure for diabetes because having diabetes means I have to have shots and I can get really sick sometimes and I have to go to the hospital," she wrote to U.S. Sen. Daniel Akaka.
Natalie and her 6-year-old sister, Emma, are daughters of Chris and Melissa Benjamin of Niu Valley. Chris Benjamin is past president of the Hawaii chapter of the Juvenile Diabetes Foundation International. He now chairs a support group for kids with diabetes.
He said Natalie is very responsible and understands her disease. "But she cries almost every day when she has a shot. She has two shots a day. The morning shot is a very large shot, more painful. ... It's a tough way to wake up every morning."
Special to the Star-Bulletin
The Benjamin family: Chris and Melissa with Emma, left, and Natalie.
Natalie also has rheumatoid arthritis, which goes into remission, then flares up, Benjamin said."It's always very uncertain when it will wax and wane, but diabetes is constant. Until there's a cure, we know it's not going anywhere. It's forever," he said.
"We view our job as Natalie's parents to try to keep her under control as much as possible until a cure is found. We hope that isn't too far off."
Natalie will represent Hawaii at the first Juvenile Diabetes Foundation Children's Congress on Sunday through next Tuesday in Washington, D.C.
Mary Tyler Moore, the foundation's international chairwoman, will lead children and families from all 50 states in explaining what it's like to be a child with diabetes, an incurable disease that kills one American every three minutes.
They will meet Monday with Health and Human Services Secretary Donna Shalala. The next day they'll call on congressional representatives to urge increased funds for diabetes research.
The children's theme: "Promise to Remember Me."
Natalie will give Hawaii's delegation copies of hundreds of letters from children and adults here, including all of her second-grade classmates at Punahou School.
In her letter to Akaka, Natalie noted that Akaka's granddaughter, Rachel, is in her class and sees her poking her finger.
"She asks me if it hurts. I told her that it used to hurt when I was 3, but now it only hurts sometimes. The worst part about having diabetes is the (insulin) shots, because the shots hurt a lot more than the finger pokes do."
Symptoms gradual
In a telephone interview from Michigan where the family is visiting, Benjamin said Natalie was almost 4 when diagnosed with Type I diabetes, requiring insulin injections to live.She started losing weight, was very thirsty and going to the bathroom several times a night, he said. These are common signs of diabetes but they happen so gradually "you don't really notice it," he said.
A doctor suggested the child had a urinary tract infection, but no blood work or urinalysis was done, Benjamin said. Then Natalie began having stomach problems. "By the end, she was curled upon the floor writhing in pain."
A friend suggested she might have diabetes and, looking the disease up in a health book, the Benjamins agreed.
They took Natalie to the emergency room at Kapiolani Medical Center for Women and Children.
"They said probably 12 hours later she would have been in serious trouble," Benjamin said. "That was the scariest thing."
He's found "everyone goes through almost the same thing" in diagnosing children with diabetes, he said. "Yet there's not enough knowledge out there to avoid it. It's amazing more people don't know the signs of diabetes."
Natalie was in the hospital six nights -- "easily the worst nights in my life," he said.
"You're just devastated. You get used to shots and finger pokes. That's the most obvious superficial problem of the disease. The real impact is on long-term complications. That's why diabetes is so dangerous."
Children often rebel against the disease, Benjamin said. "But it only takes three days of rebelling to kill a child. If they stop taking insulin and pretend they don't have diabetes for three days they can literally kill themselves."
Benjamin, formerly with Queen's Medical Center, now works for a company developing cancer treatment centers in Asia.
Welcome support
With his experience in the health-care field, he said he was able to draw on resources and people he knew to deal with nutrition, exercise and medical aspects of his daughter's disease.Realizing many people don't have such help, he said the support group prepared a packet of material with a list of contacts for families with newly diagnosed children. They're also paired with families who went through the experience with a child the same age, he said.
At Natalie's request, Benjamin said he and his wife have gone to her classes to explain diabetes and answer questions. "The kids have just been wonderful," he said, with no teasing -- just curiosity and sympathy.
Jane Kadohiro, a University of Hawaii professor of nursing and longtime leader in diabetes groups and summer camps for children with diabetes, said Natalie is "just a neat, outgoing young lady -- very bright and very actively involved with life."
"Mom and Dad don't let the diabetes stop her, and neither does she," Kadohiro said. "They've been very, very active coordinating and getting together other parents."
The support group was almost defunct when Natalie was diagnosed, Benjamin said, adding that Kadohiro and Teresa Alejado of Kaiser Permanente helped him rebuild it. Attendance now ranges from 40 to 100, he said.
The group holds meetings, usually at Kaiser Permanente's Moanalua Medical Center, and holiday parties that don't feature candy.
It helps families deal with school issues and tries to put people in touch with health-care workers who can help educate teachers about diabetes, he said.
Benjamin said it's been a cooperative effort of the Hawaii chapters of the American Diabetes Association and Juvenile Diabetes Foundation and Kaiser Permanente. The Junior League also gave the group $1,000 to support its activities, he said.
What's lacking, he said, is a way to reach people in the most needy areas and give them support.
"People kind of feel diabetes is a spouse's problem or aunty's problem, but it's really everybody's issue," Benjamin said. "That is one of the big barriers.
"I think kids will come away from this (the Children's Congress) with a greater appreciation for their role in trying to make change happen."
He said Natalie's class studied government the past year and she's proud and excited about going to the Capitol and "seeing Rachel's grandpa."
What is diabetes?
It's an incurable, life-threatening disease of two major types:
Type 1, usually diagnosed in childhood and known as juvenile diabetes, occurs when the pancreas stops producing insulin. Type 1 diabetics must take multiple insulin injections to stay alive.
Type 2, usually diagnosed in adults, occurs when people have some insulin but their bodies don't use it effectively.
For more information about the disease or support group, call the Hawaii chapter of the Juvenile Diabetes Foundation International at 988-1000, or (800) 925-5533 from the neighbor islands.
Calls also may be made to the Hawaii affiliate of the American Diabetes Association at 521-1142 or (800) 342-2383; Jane Kadohiro, University of Hawaii School of Nursing, at 956-3262; or Chris Benjamin at 528-0888.
Source: Juvenile Diabetes Foundation International
