Island youngsters cope with diabetes, look to help others
Paris Deacon and Juliana Ruggieri, who goes by the nickname Juji, both 11, will grab a rake, a mop and a broom at Clara Barton Camp, where girls with Type 1 diabetes learn to manage their condition. They hope their six hours of effort will raise enough money not only to pay their own camp costs but also pay other children’s way, too, their parents said.
Type 1 diabetes, once known as juvenile diabetes, develops when the pancreas stops making suffi- cient insulin. The condition has no cure.
Paris was diagnosed seven years ago, and doctors discovered Juji’s condition two years ago. For now, their diabetes is under control, their parents said, and the girls lead active lives. Paris, a Lawn Avenue School sixth grader, plays basketball, field hockey and lacrosse. Juji, who is in fifth grade, plays soccer and competes in gymnastics. Recently, she grabbed first place in the state gymnastics tournament, said Sherri Deacon, Paris’ mother. But no one knows what will happen when they mature.
“These kids look perfectly healthy,” said Juji’s mom, Julie Ruggieri, “because they are managed 24/7.” But they are both insulin dependent, and any break in their medical regimen could land them in an emergency room or worse — in a diabetic coma. She feels camp helps the children deal with the medical condition.
Six children with Type 1 diabetes live in Jamestown and camp puts their diabetes in context, Ruggieri said. They’re no longer just one of a few kids in Jamestown. The children see the bigger picture when surrounded by other kids in the same situation.
“This is her chance to be like all the other kids,” Ruggieri said.
“I wouldn’t miss it for anything,” Juji said. Last summer, she played soccer, went out for cheerleading, ate s’mores around the campfire, skidded down a soap slide and made a lot of new friends. Best of all, she learned to adopt a “whole new attitude” about her condition, said Ruggieri.
A year ago, for example, Juji refused to let her mother test her blood sugar if anyone might notice. She wore a pump to regulate her insulin, but hid the device under her shirt. All that discomfort changed after camp, her mother said.
Juji decided to get serious about managing her diabetes, she said, because at camp she met girls who went to the emergency room.
“I want to make sure I take care and not end up in the emergency room,” she said.
Her diabetes was discovered during a medical exam, but Paris was not diagnosed until it was almost too late to save her.
“I didn’t know what the symptoms were,” Deacon said. About a month before the emergency, Paris started drinking a lot of water; she took her to the doctor, who suspected a respiratory condition. When the child grew worse, Deacon and husband Kevin rushed Paris to Newport Hospital.
“They knew what it was right away,” Kevin Deacon said. Doctors told her parents she might have died if they had not acted that night.
A team from Hasbro Children’s Hospital met them in Newport and rushed Paris to the Providence hospital. She stayed there two weeks.
“We were scared out of our wits,” he said. And they’re still concerned.
For an adult, the diet, exercise and medication regimen is complicated, but for a child, the effort can be daunting. Making the right choices all the time can be hard, said Sherri Deacon.
“It’s been a struggle,” Deacon said. “Her friends are usually very good, but they don’t have a condition like Paris does.”
For example, they can eat candy and junk food. Paris cannot. She must stick to a healthy diet to keep her diabetes under control. And if she doesn’t test and give herself insulin, the consequences can be terrible.
Deacon said the equipment and technology has improved since the days when diabetics had to inject insulin with a syringe, but “it’s still a lot for a child to handle.”
“There are no days off,” Kevin Deacon said.
Ideally, the children’s work will help send all the Jamestown children with Type 1 diabetes to the Barton Center camps — Camp Joslin for boys, in Charlton, Mass., and Clara Barton for girls, in North Oxford. According to Sherri Deacon, two weeks at camp costs $2,500. That’s a big expense for families already dealing with medical costs.
People who want to donate can make out a check to Clara Barton Camp or Camp Joslin, put a child’s name in the memo line, and mail the contribution to Sherri Deacon, 67 North Road, Jamestown, RI 02835.
Two-week summer sessions start on July 3. The boys’ camp opens with a one-week session on June 26. Sessions continue through the summer.