Diabetes’ Toll Unites Fathers : * Common struggle with the agonies of their children’s illness leads to support group and foundation.

Juvenile diabetes is an illness that could easily cause children to grow up--and parents to age--too quickly.

The school-age children who have it must exercise more self-control than many adults could manage, and their parents have more reason than most to worry when it’s time to start letting go.

The day-to-day stress of living with juvenile diabetes is all too familiar to John Haretakis and Bob Grant, for whom the illness has made fatherhood far more challenging than they ever anticipated.

Whenever Haretakis’ 12-year-old daughter, Nicolina, and Grant’s 10-year-old son, Bobby, are out of sight, their dads wrestle with the concern that the kids will give in to the impulse to substitute a candy bar for a healthy snack or skip a vital part of their daily treatment program.

Both children must have four blood tests and three insulin injections a day and follow a strict regimen of diet and exercise--or face serious health consequences, not to mention the wrath of their devoted fathers.

“It’s a tough life for kids,” Grant says.

“It puts a lot of pressure on the whole family,” Haretakis adds.

The two Orange County residents are longtime business associates--Haretakis owns Spires Restaurants and Grant is a tax partner with Deloitte & Touche--who have become friends as they’ve shared the agonies of living with juvenile diabetes.

They’ve also become partners in a nonprofit venture called the Pediatric Adolescent Diabetes Research and Education (PADRE) Foundation, which they say has raised $1.5 million since its creation in 1985.

Haretakis came up with the idea of starting PADRE after his daughter’s illness prompted him to ask Children’s Hospital of Orange County’s medical staff what he could do to help. Once he got an answer, he didn’t waste any time setting up the foundation and enlisting Grant to help him run it.

They used their considerable energy and business acumen to advance their cause, and with help from volunteers--including a number of Spires’ employees--soon raised enough money to establish a juvenile diabetes research lab at CHOC.

According to Haretakis, who is chairman of the board, and Grant, who serves as president, nearly all the funds raised by PADRES go directly into research.

Dr. Bruce Buckingham, who directs the research program and is head of Pediatrics Endocrinology at CHOC, gives Haretakis and Grant credit for making a significant contribution to the medical community’s effort to find a cause and cure for juvenile diabetes.

“They’re wonderful people, very giving, very dedicated,” Buckingham says. “They’ve made very significant personal commitments in terms of their time and money.”

Buckingham says PADRE has funded not only studies aimed at preventing and curing diabetes, but also new technology designed to make it easier for children to live with the disease. For example, CHOC researchers are now developing a non-invasive method of monitoring blood sugar levels that would eliminate the need for painful finger pricks.

Haretakis and Grant acknowledge that raising funds for research that might improve the prognosis--and the quality of life--for those who suffer from juvenile diabetes is their way of coping with the uncertainty of their own children’s futures.

Through educational programs, support groups and social events organized by PADRE--including an annual, sugarless Halloween party for children--they also hope to help other families draw strength from knowing they are not alone.

They’ve been giving moral support to each other ever since Grant learned his son, Bobby, had juvenile diabetes, at 19 months. Bobby had shown such symptoms as extreme thirst, frequent urination and sudden weight loss. (Other common signs include frequent bed-wetting by children who have been toilet trained, extreme hunger, weakness and fatigue, irritability, nausea and vomiting.)

Bobby’s parents had been giving him insulin injections at home for two years when Nicolina Haretakis’ diabetes was diagnosed when she was 5. The Grants responded to the news by taking Bobby to the hospital to see Nicolina.

Haretakis says that visit gave him and his wife reassurance--desperately needed at a time when they knew little about juvenile diabetes--that the illness would not stop Nicolina from leading a normal life.

Both families participated in classes to help them understand the nature of juvenile diabetes and the regimen that would have to be followed religiously to keep it under control.

One in 500 children has juvenile diabetes, and 85% of them have no family history of the disease, although the tendency to develop it is believed to be genetic, according to Buckingham.

Juvenile diabetes develops rapidly--usually between ages 2 and 4 or 10 and 15--when the body’s immune system attacks and destroys the insulin-producing cells of the pancreas. Insulin helps sugar (or glucose) enter the cells, where it is changed into energy. When the body fails to produce enough insulin, sugar builds up in the bloodstream, eventually causing such complications as blindness, kidney and heart disease and nerve damage.

However, with a program of daily insulin injections, proper diet and regular exercise to keep the average blood sugar level down, the risk of long-term complications decreases, Buckingham says.

Insulin is so vital that failure to follow through with prescribed injections can lead to coma and death.

Because it takes so much discipline to keep the disease under control--and the consequences of not following the treatment program are so serious--children and parents dealing with juvenile diabetes are under a lot of pressure, Buckingham notes.

“It’s something you’re constantly aware of. Some of the kids do a lot better than I would,” he says.

However, it gets tougher for kids with diabetes to follow the rules when they get into the rebellious teen years, says Janice Barsun, a social worker at CHOC, noting that PADRE has started a peer counseling program to support adolescents.

“I’ve seen teens who say they don’t want to have diabetes anymore and actually stop taking insulin,” says Barsun, who leads a support group for children with diabetes.

She says children in the group have complained that some of their friends’ parents think diabetes is catching, while others assume they have it because they ate too many sweets.

“That’s totally false,” Barsun stresses. “I try to give the kids more information about the disease because the more they understand about what’s going on in their bodies, the more control they’ll feel they have and the easier it will be to accept what’s happening.”

Nicolina Haretakis admits it isn’t easy to maintain a diet that prohibits sweets and requires her to have balanced meals and healthy snacks at regular intervals.

“It’s hard to watch my friends eat things that I can’t,” she says.

She remembers screaming when she first started receiving insulin injections at age 5, but now she calmly gives herself the daily injections as well as the blood tests that determine how much insulin she needs. She has developed calluses on the fingers she pricks to draw blood, and she has bruises on her arms and legs from the injections, which she admits are still painful.

Nicolina, who is thrilled that one boy who liked to tease her has moved away, says her friends are so used to her health regimen--including the blood test she performs at school--that “sometimes they forget I’m a diabetic.”

Often, she wishes she could, too, she adds.

It has helped to meet other children with diabetes through PADRE, Nicolina says on an afternoon when her friend Bobby Grant is visiting.

The two children demonstrate how a Glucometer, which resembles a calculator, keeps track of their blood sugar levels and the amount of insulin they have been taking.

Their parents monitor the numbers closely, because a significant change in the blood sugar level lets them know there’s been a slip in the diet and exercise regimen.

Both Haretakis and Grant have been through crises with their children that make it difficult to put their fears to rest. Even though Nicolina and Bobby are good about following the rules, they’ve both been through scary incidents when their blood sugar level dropped so low that they nearly lost consciousness.

One night about five years ago, Grant had to call paramedics to revive Bobby, whose equilibrium was upset by a case of the flu that kept him from eating properly.

“It was a terrifying experience,” Grant says, noting that it’s difficult for parents of diabetic kids to ever totally relax.

Nicolina’s mother, Cathie Haretakis, agrees. “I don’t think you ever really adjust,” she says. “When they’re small, you’re the person who has diabetes. You’re always standing over them, making sure they eat and take their injections.”

And even though Nicolina is old enough now to understand why her health regimen is so vital, her parents still worry that she’ll take chances she’ll pay for later. Cathie explains: “We know she knows what’s right and wrong, but we’re afraid she’ll slip when she’s with friends because she just wants to be like everyone else.”

Developing programs and raising funds through PADRE is one way Haretakis and Grant keep themselves from dwelling on that fear.

“It helps to feel you’re doing something,” Grant says.

Adds Haretakis, “It helps you keep your sanity.”