For Diabetic Group, Coping Is Child’s Play

When Patty Conlan’s young daughter was diagnosed with diabetes, Conlan did what mothers do. She panicked.

Overprotective at times, Conlan didn’t want Bridget far out of sight. Conlan felt helpless. Her daughter felt alone.

“Isn’t there anyone else with this disease?” Bridget impatiently asked after six months of treatment.

Conlan knew there were many others, but didn’t know where. Determined to find out, she began three years of activism that led to her creation of Kids with Diabetes Inc., a nonprofit play group for juvenile diabetics in Ventura County.

These days, a vivacious 10-year-old Bridget struggles to sit still in the cozy living room of her parents’ east Ventura home. She handles a flier that advertises the latest Kids with Diabetes gathering, the first that Bridget and her mom would miss.

“People don’t understand that you’re free,” Bridget said of the disease, shaking her head in disapproval. “A lot of people think they can’t live a normal life, but they’re wrong.”

Despite her condition, Bridget is the dynamo one expects in adolescence: The fifth-grader plays youth-league basketball, contorts in gymnastics class and rides her bicycle frequently.

Until she removes from a backpack the plastic container needed for her blood sugar test, she appears the epitome of health.

“She stopped taking a nap when she was 1 and sleeps less than anyone in the family,” Conlan said. “She never gets tired.” Bridget is the lone member of her family who battles diabetes, and each day fights to maintain her active existence.

She is one of an estimated 15.6 million Americans under age 20 diagnosed with the disease, representing about 8% of that age group, according to the National Diabetes Information Clearinghouse.

The disease often requires a certain intimacy with needles. Bridget gives herself an average of five to eight finger pricks a day with a thumbtack-like device, in addition to three to four injections of insulin. Those numbers fluctuate when she is sick or more active. At last count, she had received in excess of 4,000 shots.

Her diet is strictly monitored to limit sugar intake. But her attitude remains positive.

Bridget said life did not end that day in December 1996 when, at age 6, she was diagnosed with diabetes. No matter how afraid her parents were, nothing could keep her from being hopeful--even though her parents were not.

“They were freaking out,” she said, pointing a condemning finger at her mother. “They wouldn’t even let me go caroling.”

Patty Conlan said she reacted with extreme caution out of fear. But when her daughter asked in a frustrated tone whether anyone else lived a life ruled by insulin, Conlan began her full-court press.

She searched for a play group of children with diabetes, and when she could not find one, she decided to create her own. She and her daughter typed up fliers, advertising a Saturday morning gathering for kids with Type-I diabetes at Chumash Park in Ventura.

They placed newspaper ads and distributed their fliers all over town. At the first play group, two years ago in June, only one family--the Sousas--joined them. Vanessa Sousa, then 11, was the only other diabetic Bridget had met.

“That’s what has been exciting for us about the group,” said Vanessa’s father, Doug. “For these kids, this might be the only contact or association they have with other people who have diabetes.

“It’s a normal thing to be together with those kids and check their blood sugar, eat snacks or inject insulin. Usually, in their everyday life, they don’t have that experience.”

Instead of feeling defeated by the lower-than-hoped-for turnout, Conlan and her daughter found encouragement. Vanessa’s mother, Tanya, expressed relief at having met another family fighting the disease in Ventura County, Conlan said, and each child met a new friend.

Conlan continued hosting play groups at Chumash Park the third Saturday of every month. As the organization grew, Conlan solicited donations from area businesses to help her pay for the special sugar-free snacks and other needs distinctive to a gathering of diabetes patients.

A few businesses gave without question, but several said no--only wanting to donate if the play group were part of a nonprofit organization.

At the time, Conlan had no idea how to apply for nonprofit status, so she bought a how-to book. By November 1999, Kids with Diabetes was incorporated, and it received official approval of its nonprofit status in February.

These days, fears that only one family would show up for the play group are long gone. This month, Kids with Diabetes added the 100th name to its list of participants and health-care professionals.

The organization has its own Web site, https://www.kidswithdiabetes.org, and Conlan said she is trying to write a how-to pamphlet for parents anywhere who want to start a diabetes play group of their own. She said she hopes to post the pamphlet on the Web site later this year.

“The challenge now is that the group is growing so fast,” Conlan said. “But if we can help families avoid the six months we went through, this is more than worth it.”

And Bridget, well, Bridget is too busy playing to answer many questions, exactly as her mother planned.

“We tell her that her job is to be a kid,” Conlan said, smiling proudly. “Our job is to manage the disease.”

FYI

Anyone interested in Kids with Diabetes Inc. can call (805) 671-5059 for more information.