Nine-year-old Kayleigh Filkins of Niskayuna hates to feel different from her friends.
That’s why she liked going to the recent Sugar Free Gang Kids Camp at the Clifton Park Elks Lodge in Clifton Park.
“You get to talk about diabetes with everybody, and nobody makes fun of you,” said Filkins, who has had diabetes for two years.
Thirty-seven children ages 5 through 12 attended this year’s summer recreation program to have fun and learn more about their disease and how to manage it through creative games, sports and entertainment.
Twenty-three young adults, many of whom were once campers themselves, acted as counselors and counselors-in-training and served as role models while helping the campers.
Type 1 diabetes is a lifelong disease that can affect both children and adults. It occurs when the body attacks and destroys the cells in the pancreas, which makes insulin. The body needs insulin, which is a hormone required to use food for energy.
Joanne DeNovio, Center for Diabetes Program Coordinator for Ellis Hospital and director of the Sugar Free Gang, a monthly support group for children with diabetes, said the biggest missing piece in treating a child with diabetes is dealing with the emotional challenge.
“These kids live with diabetes 24/7,” said DeNovio, who was awarded the national 2008 Diabetes Camp Educator Award from the American Association of Diabetes Educators. “Most, if not all, of these kids are the only kids in their school with diabetes. So for them to actually meet other kids with diabetes is pretty amazing for them.”
DeNovio said most people in the community don’t understand the challenges facing kids with diabetes or how to handle emergency situations that may arise.
“The greatest fear that parents have is sending their children off into the world and not knowing if people are going to know how to intervene if their child needs emergency care,” said DeNovio. “That’s the great benefit of a diabetes camp. It’s the one place where parents can send their children and know that they are surrounded by competent health care professionals who will know how to meet their children’s challenges.”
At school, many of these kids spend a lot of time in the nurse’s office missing periods of recess, lunch, or classes, said DeNovio.
“Many of the other children will look at their insulin pump or their blood glucose meter and ask a lot of questions and force them to explain constantly. It becomes very frustrating,” she added.
Many children with diabetes also have fears.
“I think they worry,” said DeNovio. “It’s obvious their parents are concerned and their school nurses, teachers and other adults are concerned about their care, and that trickles down to the child. They do not fear so much about their future, because kids don’t think that way, but they are fearful about what their blood sugar results will be and what reaction their parent or school nurse is going to have to that blood sugar level. It’s a lot of responsibility for a little person.”
DeNovio said she tries to tell the children it’s OK to feel that way.
“There is a sadness about having diabetes that is normal, but you can come to a peace about it, an understanding that it will be OK,” she said.
At the camp, one of the kids’ projects involved writing one or two words on their hands about what it’s like to have diabetes.
“Relentless,” “24/7,” “bleeding inside,” and “unique” were some of the responses.
“Most of these kids learn at a very young age how to deal with a very difficult disease that is with them 24 hours a day, seven days a week,” said DeNovio. “Here at camp, the pain of having diabetes coexists with the joy of finding support.”
The kids also wrote their thoughts about diabetes on a banner. Some of the responses:
-- “We can do anything other people can do”
-- “If you have diabetes, you can meet neat people”
-- “Life with diabetes is a roller-coaster ride. If you ride with other people, it’s more fun”
Ann Levitt, registered nurse and diabetes educator, said the kids learn that they can manage their diabetes and still live a full life.
“The kids learn what they have to do to take care of themselves, and it becomes integrated into their lives,” she said.
Allie Diefendorf, 16, a counselor from Albany, was 5 when she was diagnosed with diabetes.
“It’s really nice to know that everyone here has diabetes and they can relate to you,” said Diefendorf. “If your sugar is low and you’re drinking juice, you don’t have to explain.”
Daniel Lennon, 7 1/2, a camper from Clifton Park, said the hardest thing about having diabetes is when you have to stop playing to test.
Sarah Butensky, 18, a counselor from Albany, has had diabetes for nine years. “This camp allows the kids to meet other kids who are just like them,” said Butensky. “They know they are not alone and they make friends they can relate to. The friends I make here are like my second family.”
Joan Clifford, director of the American Diabetes Association in Albany, said it’s important for kids who have diabetes to feel regular like other kids.
“They are singled out during the school year as having something different from the other kids,” said Clifford. “This gives them an opportunity to be with other kids just like them.”
DeNovio said the best way for kids to understand that they are not alone is to get together with other kids who have diabetes and talk about their fears and challenges.’
Sugar Free Gang meetings
The Sugar Free Gang meets the first Wednesday of every month at the Ellis Hospital School of Nursing, Erie Boulevard, from 6:30 until 8:30 p.m. There is also a meeting for parents at the same time.
“Then the kids can go back into the world and know that there is one place where they can go once a month and feel normal,” said DeNovio. “The camp and the Sugar Free Gang meetings help parents learn how to manage diabetes, and talk about the day-to-day challenges you will not find in a book. It’s the people who live with the disease who come up with pearls of wisdom.”
DeNovio said it’s important for people who interact with kids with diabetes, such teachers and coaches, to know how to care for them in an emergency.
“There is a lack of knowledge out there,” said DeNovio. “And the dilemma that parents face is putting their kids out in the world once they are diagnosed with diabetes.”
DeNovio said she is working closely with the state Department of Health in trying to educate people in the community about diabetes.
“There is a program through the Department of Health that funds diabetes educators like myself to go into the schools to train school nurses,” said DeNovio. “These kids are facing real issues, and the need is out there for education.”
Further information is available by contacting DeNovio at the Ellis Hospital Diabetes Center.