All in the Family: Couple Struggles With Three Diabetic Children

June 8, 2010 -- Sarah Coffey of Peoria, Ill., is a typical 14-year-old. She goes to school, plays in her school's band and enjoys hanging out with her friends.

But what sets her apart from most other girls her age is that she has Type 1 diabetes.

What sets her apart even more is that her two younger siblings also have the disease known alternately as juvenile diabetes.

Doctors diagnosed Sarah three years ago. She was the last of the three children to get the news.

"Sarah's diagnosis was the hardest to deal with, because it seemed so unlikely that it could happen," said Lori Coffey, Sarah's mother.

That all the Coffey children have diabetes while their parents don't is indeed an anomaly.

"Five percent of the families we see have more than one child with diabetes. It's very unusual to get three," said Dr. Bruce Buckingham, professor of pediatric endocrinology at Lucile Packard Children's Hospital at Stanford in Palo Alto, Calif.

He has no affiliation with the Coffey family.

Emily Coffey, the middle child, now 11, was the first to be diagnosed with diabetes. She was two and a half years old at the time.

"She was still in diapers, and I noticed that her diapers were really, really full," Lori Coffey said. "That indicated to me that she was urinating more and I knew that was a symptom for Type 1 diabetes."

The heavy urination continued so Coffey and husband Brian brought Emily to the doctor.

"They checked her urine for glucose and that test was positive, and then they checked her blood-sugar and the level was so high that the meter couldn't even read it," she said.

Multiple Diabetes Diagnoses Hit Family

A few years later, Coffey got the same diagnosis for 5-year-old Matthew Coffey.

"One morning, he had wet his bed," she said. "He had been drinking a lot of water, and I checked his blood-sugar and it wasn't terribly high, but I knew it was too high for someone with a healthy pancreas.

"We took him for some outpatient treatment that day and the doctor started him on insulin that day."

Six months later, Sarah found out she also has Type 1 diabetes.

"I was really sad and mad and disappointed," she said.

But once the initial emotions wore off, she said, she was able to deal with the condition that has affected most of her family.

"It wasn't too hard, since my brother and sister already had it and I already knew about it," she said.

For her, the hardest part is worrying that her friends will find out.

"When I'm out, people don't know I have it and I have to tell them," she said. "I have to check my blood sugar and bolus [insulin] in front of them and it's hard to explain."

Parents Face Challenges of Diabetes

"Standard protocol is to check their blood sugar levels 8 to 10 times every day and count the grams of carbohydrates they eat, so we're constantly looking at labels," Coffey said.

The children all use insulin pumps, which are attached all the time by a catheter that goes under the skin. Their sites need to be changed every two to three days.

With insulin pumps, Coffey can input the children's blood sugar and the number of grams of carbs they've just eaten. The pump will then dispense the appropriate amount of insulin.

Diabetes Places Demands on Children

The children have to remember to check their blood sugar levels at school throughout the day, but they don't always do it as often as their mom would like.

"I check when I wake up, before I eat lunch, when I get home at dinner and then before bed," Sarah said.

Coffey said, "I would like them to check more often because if they're running high, they can correct themselves quicker."

It gets trickier during the summer, when the children enjoy going swimming and when they want to go out and play. They often have to change their pump sites every day. The family also has to be sure to carry extra insulin and supplies wherever they go.

And there are many times when Matthew, the youngest child, now 9, doesn't check his blood sugar at all or doesn't take insulin after he eats.

"He'll sneak food and not tell me that he ate it, or he'll forget, so when I check his blood sugar later, it will be really high," Coffey said.

That's common in children with diabetes.

"Kids get busy, and it's a lot to remember to check blood sugar and take insulin all the time," Buckingham said.

Incidence on the Rise

The symptoms of Type 1 diabetes include increased thirst, frequent urination, extreme hunger, fatigue, weight loss and blurred vision. If left untreated, Type 1 diabetes can lead to cardiovascular disease, nerve damage, kidney damage, vision problems, hearing problems and other serious complications.

That the Coffey children have Type 1 diabetes and their parents don't is unusual, but their diagnosis seems to reflect a growing trend.

"I think the incidence is going up a little bit," Buckingham said. "Now, we're seeing it in about 1 in 300 or 400 children, and there seems to be a higher incidence in children younger than five."

And, he added, there's no one cause for Type 1 diabetes in children.

"There are a lot of theories, such as things in our diet, like exposure to wheat protein, viruses in the community and others. But nothing can be proven."

As doctors and families such as the Coffeys can attest, there is no cure, either. There's also no way to prevent it. But there are things people can be aware of.

"We strongly recommend that anyone with a family member with diabetes get tested," Buckingham said.

"We can test for antibodies in the blood. If there are multiple antibodies, then the risk goes way up," he added.

Research into a cure for juvenile diabetes is ongoing, and there are some promising treatment prospects out there, including the development of an artificial pancreas and more studies examining people's ability to regenerate their own islet cells.

While Lori Coffey and many others dream of a cure, they're also working hard to raise awareness.

"Informing people is equally as important as raising money. It's by being informed that people can help their kids by getting them to the doctor and getting them diagnosed and getting them the help they need," Coffey said.

Professor Buckingham said, "We're really pushing increased public awareness. If a child has increased thirst or increased urination, the child should be tested for diabetes."