Eastbayri.com

BRISTOL — Brooke Cairrao looks as healthy as any other 10-year-old girl, with the same dreams and aspirations.

She plays soccer — Brooke would like to play professionally some day, in fact — and has an innovative idea for her own business.

“I also want to own my own hair salon, plus pet store in the same building. After they get their pet, they can just go into the grooming salon,” the fifth-grader said during a chat at her Bristol home last week.

You’d never guess from looking at her that Brooke is under constant medical care around the clock.

“Unfortunately, she is really sick,” said her dad, David Cairrao. “She just doesn’t present that to other people.”

Brooke has Type 1 diabetes, an autoimmune phenomenon in which the body is unable to produce insulin, a hormone needed to convert sugar, starches and other food into energy needed for daily life. Only about 5 percent of people with diabetes have Type 1. Previously known as juvenile diabetes, it’s usually diagnosed in children and young adults.

Mr. Cairrao is a member of the Juvenile Diabetes Research Foundation, but doesn’t like using the term “juvenile diabetes.”

“It’s Type 1 diabetes; you never outgrow it. It’s treatable but there’s no cure for it. Hopefully in the future, they’ll have a cure,” he said.

Dr. Greg Fox, a Bristol pediatrician with a private practice in East Providence, said one person in about 400 or 500 have Type 1 diabetes. “In Rhode Island there’s no registry, but the estimate is 750 to 1,000 kids under 18,” he said. “It’s much more common that you think and it has become more common over the past 20 years. Nobody really knows why.”

It’s a disease that requires a special kind of vigilance from not only the parents or caregivers, but children with diabetes themselves. “With Type 1, you either get treated or you die,” said Dr. Fox.

That means daily injections of insulin — sometimes in the middle of the night — to keep Brooke’s blood sugar at a normal level. Her parents had to start administering their daughter insulin shortly after Brooke was diagnosed with Type 1 when she was about 21 months old. Luckily, their professional lives helped prepare them for what was in store.

“My wife’s a paramedic and I’m a firefighter,” said Mr. Cairrao, a captain in the Pawtucket Fire Department, “so we were familiar with the EMS and medicine side of it. We had to give her a shot in the morning and then every time she ate, she had to get a shot based on how many carbohydrates she ate. Now she has a pump which administers insulin throughout the day, but we still have to put in how many carbs. The pump tells us how many units to administer.”

According to Dr. Fox, about half of all children who have Type 1 still use a needle — usually in the form of a pen-like device — to administer insulin. “About 50 percent are on insulin pumps, but some kids aren’t comfortable with them; they don’t want something attached to them,” he said.

Taking care of herself

A couple of years ago Brooke started administering the insulin herself during the day, including when she was in school. Every day before lunch she stops by the office of the Guiteras School nurse, Marguerite Crocker. Brooke pricks a finger and uses a glucometer to measure her blood sugar level. Based on that number, she knows how much insulin she may need from her pump.

“Then I eat lunch. After lunch I go up to her again, add up all my carbs, and (plug that number into) my pump. I can do it by myself, but sometimes the nurse just wants to watch,” said Brooke, who’s blood sugar levels are checked anywhere from six to 10 times a day, depending on her activity level and how she’s feeling.

The pump allows Brooke to sleep soundly through the night — but not her parents. “My wife and I have to get up at midnight or 3 in the morning to make sure her levels are fine,” said Mr. Cairrao, adding that the insulin can be administered without disturbing their daughter.

It’s all second nature for Brooke, as this is how her life has always been. And no, being the only student in school who has to care for herself in this manner doesn’t bother her. “It’s not really hard because all my friends know I have diabetes,” she said, adding that the extra time she spends checking her levels hasn’t hampered her school work.

Camp Surefire

However, Brook does have some limitations. Sleepovers, for example, are problemsome. That’s why she looks forward to attending Camp Surefire every summer. The week-long sleepover camp for children with Type 1 diabetes offers a full staff of doctors, nurses, counselors and nutritionists, all of whom volunteer their services to ensure that campers are safe while they’re having fun.

“(Brooke) can get away from us and go be with other friends do wonderful things she wouldn’t be able to do at other camps,” said Mr. Cairrao.

The camp is this year’s beneficiary of the annual Faith Walk for Charity walk Sunday, Oct. 2, at 2 p.m. in Colt State Park, Bristol (see related story). Founded in 1998 by the Diabetes Foundation of R.I., the camp is now run by Dr. Fox and his wife, Ali.

“We’re looking for them to get a little bit stronger foundation of what their diabetes is about so they’re motivated to treat it better,” said Dr. Fox, who signed on to be camp doctor when he did his endocrinology fellowship at Hasbro Children’s Hospital.

“My first season was 2001. They kind of recruited me to be camp doctor for life,” said Dr. Fox, adding that he loves practicing medicine in sandals.

When the Foundation folded three years ago, the Foxes took the camp over to keep it going, and founded the Camp Surefire Foundation to support the camp financially. “We found out the Diabetes Foundation was going to fold in February, we incorporated the organization in April to run a camp in July. It was insane,” said Dr. Fox.

The camp, for ages 6 to 16 —older kids are enrolled in the leaders-in-training program — has grown from a weekend getaway for about 20 kids to this year’s roster of 79 campers at the University of Rhode Island’s Alton Jones Campus. Dr. Fox said he’s thinking about adding a winter session, too.

There’s about one counselor for every three kids, as volunteer counselors, dietitians and nurses monitor the children around the clock. “They have to keep an eye on them constantly because they could have low blood sugar at any point, including 2 o’clock in the morning. They’re watching these kids like hawks,” said Dr. Fox.

‘Learn by osmosis’

The camp is much like a traditional one, with athletics, swimming, crafts and water balloon fights. Much of the diabetes education, Dr. Fox said, is “learn by osmosis — learn from your peers,” but there are also games with a diabetes theme while more formal education is presented to teen campers.

A popular activity is the cookie bake-off, in which campers learn what components of their food have carbohydrates and how to regulate their carb intake. “They make cookies and they need to count the amount of flour that goes in it,” Dr. Fox said.

Much of the focus is helping campers become more independent in caring for themselves. “The littler kids essentially count on their parents to do everything for them,” Said Dr. Fox. “At some point, the parents need to turn over the reigns to their kids.”

Older children who have taken over more responsibilities involving their care — ages 12 to 13 — have their own challenges that the camp addresses.

“They have the physical capabilities of giving the shots and checking their blood sugars, but they don’t necessarily have the insight to make long-term decisions,” said Dr. Fox. “So, a lot of those kids start skipping insulin doses. The parents start to nag them, so they start to rebel. It’s a huge transition between getting everything done for you and living independently and well. It can be pretty turbulent, especially when these kids are at an awkward age anyway and they’re feeling their way in the world.”

He recalled a 13-year-old girl at the camp who had never given herself an insulin injection before. She needed two injections, so one night at dinner Dr. Fox helped her with the first one but insisted she administer the second. “The whole table whooped and cheered,” Dr. Fox said.

Then there was the 7-year-old girl who ran up to his wife after she had passed her own milestone. “Mrs. Fox, Mrs. Fox. I did my insulin all by myself for the very first time. She got to that comfort level with the injection and she couldn’t wait to tell her mom,” said Mrs. Fox.

Besides teaching kids how to take better care of their diabetes, the camp’s other focus is giving children with Type 1 diabetes a sense of normalcy. “We’re trying to tell these kids, ‘This is not that big of a deal. This is part of me. This is what I need to keep myself healthy,’” said Dr. Fox.

One of this year’s motivational speakers at Camp Surefire was a 31-year-old man with diabetes who had climbed Mount Everest before becoming an iron triathlete, he pointed out.

“There’s really nothing you can’t do just because you have diabetes,” said Dr. Fox.

For more about Camp Surefire, visit www.campsurefire.org.