Carolyn Bender was lucky to have completed most of a two-year paramedic program at Camden Community College when her daughter Katherine first showed symptoms of type 1 diabetes.
One day in June 2013, she observed Kitty urinating 11 times in three hours. Bender remembers wondering if diabetes could be the culprit. The next morning, while shopping with her father at a yard sale, Kitty almost passed out.
They drove Kitty to Capital Health’s pediatric emergency room, where Bender urged hospital staff to test her blood sugar. It registered 763 — so high that she needed to be in pediatric intensive care. She was transported by critical care ambulance to Children’s Hospital of Philadelphia.
Because of Kitty, Bender got involved with the American Diabetes Association, and it’s because of her involvement with the ADA that she has started up a new nonprofit organization called The SUGAR Foundation, for which she serves as executive director.
One of the ADA’s programs is Camp Freedom, a one-week diabetes camp in Schwenksville, Pennsylvania, that Kitty attended this year from June 17 to 23. “The camp is very meaningful for kids with diabetes—it’s the only time they come together and are not different; everybody checking their blood sugars,” Bender says.
The camp draws children from every socioeconomic class. It does a good job providing scholarships, Bender says, but she noticed that it wasn’t able to fund supplies that children might need at camp, including clothes for a full week.
So she created The Sugar Foundation “to help families and Type 1 kids to get the supplies they need to go to camp and be like everyone else for that week,” she says.
Bender started The SUGAR Foundation Feb. 1. She expects to have nonprofit status in place by fall or earlier. Her oldest daughter, Victoria Kafka, who is a Merrill Lynch analyst, tracks incoming funds and her middle daughter, Elisabeth Peters, is vice president.
She also works closely with the American Diabetes Association-Eastern Pennsylvania and Delaware, which runs Camp Freedom, and in particular with Nathan Hughes, development manager, and Michelle Foster, director for community health strategies and executive director of Camp Freedom.
Because the children all require 24-hour-a-day monitoring, the camp is staffed with diabetes professionals. Although it provides some education, mostly it tries “to give a sense of normalcy and a sense of not being isolated,” Bender says.
‘We want kids to come to camp whole, and not feel they are different.’
Because they did not yet have their nonprofit status this year, the foundation sought gifts in kind. So, for this summer’s camp, they received donations of socks and underwear; hundreds of tubes of sunscreen, shampoo, and conditioner; sleeping bags; from Christine’s Hope for Kids in Hopewell, pool towels; from a friend with years of experience as an emergency room nurse, Christina Brescia, who held a fundraiser to supply 750 juice boxes and other items.
Once their nonprofit status is in place, they will start to fundraise aggressively to provide activities and supplies in the coming year.
For next year, the ADA plans to identify campers in need and forward information to the families, Bender says, “so we can provide them with a gift card so campers can choose articles that fit them. We want kids to come to camp whole, and not feel they are different one more time because don’t have an item or have the same white sneakers that 25 other kids have.”
The foundation will also be raising awareness about both Type 1 and Type 2 diabetes, for example, by partnering with restaurants to offer diabetic friendly menus and providing education on both types at health fairs and other wellness events.
The foundation is also talking to hospitals to provide support groups for families with Type 1 children, because as yet there are none in Central Jersey.
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When Kitty had her first symptoms, Bender’s experience as a paramedic in training made her realize that her daughter needed immediate medical attention, which could have meant the difference between life and death for her daughter. What prompted Bender to train as a paramedic was the death of a patient she picked up on a run as an emergency medical technician, work she did professionally for Hopewell Valley Emergency Services and as a volunteer for the Montgomery EMS Squad 47 Rescue and for Station 192 in Hopewell Borough.
The patient had been stung by a bee and had not realized soon enough that he was experiencing anaphylactic shock. It took them 20 minutes to reach to the hospital, which was more time than the patient had.
She decided then to become a paramedic, because they can give medications and a higher level of care, and as a paramedic she might have been able to save the person’s life. “You never forget things like that,” she says.
As they walked into CHOP with Kitty, Bender says, “she was arguing with me that she was fine, but she was much sicker than we ever realized or thought she had been.”
Type 1 diabetes is often misdiagnosed or missed, and when it is not caught quickly, “the brain starts to herniate and that’s when you get seizures; many of these kids end up with brain injuries or dead,” Bender says.
Looking back after the diagnosis, Bender beat herself up a bit over missing symptoms of type 1 diabetes like unexplained, unexpected weight loss. That emergency room visit had also shown that Kitty had lost 12 pounds.
“We thought she was losing some weight, but I knew she was about to be 10, and thought she was growing and was thinning out,” Bender says. “Looking back on photos now, I cannot help but ask myself why I did not see it; the difference is indescribable. In a picture two days before the diagnosis, she looks like a ghost of herself.”
Another symptom is a cut that doesn’t heal correctly or as quickly as it should. Bender recalls wondering why she was having such a bad reaction to a skinned knuckle on her finger and attributed it erroneously to bacteria on the curb.
Type 1 diabetes is manageable, Bender says, but it can be terminal if it is not managed every day, 24 hours a day. As a parent of a type 1 diabetic, she says her biggest concern is when Kitty is asleep. “If the blood glucose goes low at night and you don’t catch it, you will have a dead child,” she says.
The body requires glucose to give energy to the body and brain. The large glucose molecules are unable to penetrate the cell wall unless insulin, made by islet cells of the pancreas, binds to cells in a way that allows glucose to enter. In Type 1 diabetes, the body makes no insulin. In Type 2, a person makes insulin, but either not enough, or the insulin they do make doesn’t absorb properly; luckily many with Type 2 can manage the disease through diet and exercise (to lower blood glucose).
After diagnosis, a person can administer insulin, through injection, a pump, or a pin. “You do your best to mimic what your body would give, understanding that it is an imperfect system,” Bender says, noting the different things that can alter blood sugar, including food, activity, weather and stress.
Even with good medical insurance, the high costs of diabetes test a family’s finances.
Although some diabetics can feel when their bodies are low or high in glucose, and then eat carbs or sugar if it is low or give themselves insulin if it is high—Kitty does not feel the changes. Hence she has two systems in place to communicate to her these highs and lows. One is a diabetic alert dog named Pandora, from Service Dogs by Warren Retrievers, who puts her paw on Kitty’s leg to alert her when she is out of range. Bender of course had to make arrangements with the school to ensure Kitty’s safety.
Kitty also has a continuous glucose sensor that injects a thin copperlike thread to measure glucose in the fluid around the cells every five minutes. Twice a day at a minimum Kitty has to test her blood sugar and tell the sensor what that number is. This technology then calculates changes in her blood sugar during the day, setting off alarms in Kitty’s and her mother’s phones if her blood sugar is too low or high.
Bender is constantly watching the movement of the blood sugars, guessing on what she needs and when and how. She tries to make those adjustments as she needs them. She checks on Kitty two or three times a night and watches her technology all day. The exhaustion that results means she does not function the way she had.
Even with good medical insurance, the high costs of diabetes test a family’s finances. And where Pennsylvania has supplemental insurance for chronically ill children, New Jersey does not.
Looking to the future and college is terrifying for Bender. She worries that Kitty does not hear the alarms or feel the vibrations of the insulin pump and that she might consume alcohol that could lower her blood sugar dangerously hours later, while she is asleep.
She also worries about the depression that can result from being so tied to the disease’s demands. If you forget supplies, you have to go home. Having a service dog makes everyone aware that you are different. Sometimes people who were close step back because they are terrified. High blood sugar itself can create personality shifts, like anger.
Kitty rides competitively at Black River in Ringoes, but, Bender says, “not every coach wants to deal with a kid who has an issue like type 1 diabetes.” Also, the adrenalin stimulated by a horse show can cause her blood sugar to plummet.
To get on an airplane requires working with the Transportation Security Administration to bring the soda, water, and snacks Kitty needs to keep her blood sugar stable. Bender also has to worry about flight delays, pack insulin pins in case the pump fails, and make sure the phone number of the closest hospital is in her phone.
Bender grew up in Oakhurst in Ocean Township. Her husband is from Princeton. His father, Stephen Bender, had a dental practice on Harrison Street for 40 years, and her mother-in-law, Rogie Rome, owned a dress shop on Nassau Street next to St. Paul’s. Bender’s husband has a courier business, Blueline Ventures, as well as a successful craft business, State Plate Signs, that recycles license plates into different kinds of art.
Kitty is the American Diabetes Association’s 2017 Youth Advocate. She will be leading Team Red in the Nov. 4 Philadelphia Step Out Walk to Stop Diabetes. She will also be speaking about diabetes at large sports events, where people will be on hand to test for diabetes. Bender says, “All you have to do is a finger stick; there are millions of people who haven’t been diagnosed who have diabetes and have no idea.”