Even though their daughter is in kindergarten, Carissa and Dan Wissman still take turns getting up nights to check on her.
Addison Wissman is a typical 6-year-old who likes dancing, playing hard during recess and eating chicken nuggets. But she has a life-threatening disease that affects as many as 3 million Americans.
Two years ago, Addison was diagnosed with type 1 diabetes, a disease that cant be prevented and for which there is yet no cure. About 30,000 new cases mainly in children are diagnosed every year, according to experts.
Since that time, her family has learned to help her manage the disease, by counting carbohydrates in her food, helping figure out how much insulin she needs to compensate for her body not making any, and monitoring her blood sugar levels through about eight finger pokes through the day and night.
For the Wissman family and others, such as 27-year-old Wichita mom Molly Tully, clinical trials of an artificial pancreas are providing hope that type 1 diabetics can live a more normal life. The device would mimic a functional pancreas by regulating insulin levels automatically.
Living with type 1 diabetes means that for 24 hours a day, seven days a week, 365 days a year, I have to fight for my life, said Tully, who was diagnosed with the disease at age 7. To me, the artificial pancreas would be almost as good as getting a cure. I would feel normal with that kind of device.
The artificial pancreas is basically a computer software program that would allow two devices that now work independently an insulin pump and a continuous glucose monitor to talk to each other, explained Dee Spade, one of three pediatric endocrinologists in Wichita.
When Spades now-16-year-old son was diagnosed with type 1 diabetes six years ago, she pursued a fellowship in pediatric endocrinology to educate herself about the disease.
Thats how I dealt with it, said Spade, who completed a residency in pediatrics in 1999 and her fellowship in 2010. I wanted to know as much as I could about intervention and research into type 1 diabetes.
Medical professionals and parents involved in groups such as the Juvenile Diabetes Research Foundation caution that the artificial pancreas isnt a cure for the autoimmune disease, but it would be a huge step in managing it. It is expected to become available in about five years.
I used to think that there would be an immunological treatment or a beta-cell transplant that would help, but this is it, Spade said.
Jed Rellihan, a 15-year-old Kansas City resident who participated in an artificial pancreas trial last year, called his time on the device a three-day vacation from diabetes during which he didnt have to worry about what he was eating, whether his blood sugar levels were too high or too low, or calculate how much insulin he needed to regulate those levels.
Taking away the fear
With type 1 diabetes, the body attacks and destroys the beta cells of the pancreas, making the production and secretion of insulin nonexistent. Insulin helps the body absorb glucose, or sugar, needed to produce energy. Type 1 diabetics must monitor their glucose levels regularly either through finger pokes or by wearing a sensor and then deliver adequate doses of insulin through shots or infusion into the body by insulin pump to control those levels.
High blood-sugar levels can cause damage to tissues and organs, putting one at risk for kidney failure and blindness, for example. Low blood-sugar levels can put one into a coma.
Constantly having to monitor or worry about ones blood-sugar levels is mentally exhausting, said Tully. It makes little things like going out to eat, even if its just a fast-food taco, more difficult. Thats something that other people take for granted.
To know theres something that would monitor her levels and administer her insulin automatically would be wonderful, Carissa Wissman said about the possibility of Addison getting an artificial pancreas. It would help take the fear out of something awful happening.
Nights when Addisons blood sugar dips low often become long and sleepless in the Wissman household, as the parents have to stay up to ensure that the little girls blood-sugar levels are stabilized. Certain activities, such as a dance class or a recess filled with lots of running, can cause Addisons sugar levels to drop. The stress of starting kindergarten this year also played havoc with the levels.
No two days are alike, Wissman said. With her growing, too, the ratio of carbs and insulin changes.
Tully, whos lived with the disease for two decades, said she remembers how awkward she felt having to monitor her sugar constantly in elementary school. Kids would call her diabetes girl or cracker breath, because shed often snack on crackers to help regulate her blood sugar.
As a child, Tully hated having to miss half of her dance class when low blood sugar zapped her energy.
As a young adult, she was scared to live alone, fearful of what might happen if her blood-sugar levels dropped and no one was there to help her.
Now, as the mom of a 13-month-old daughter, Tully worries about the long-term effects the disease might have on her body.
Its the same fear that Wissman has for her daughter.
There are times where Addisons sugar levels are up-down, up-down, and I know she gets an upset stomach and draggy. If there was something that would help keep her constantly monitored and dosed, that would be amazing.
To help improve the quality of her daughters life and the lives of other type 1 diabetics, Wissman has become a volunteer in the local chapter of the Juvenile Diabetes Research Foundation (www.jdrf.org) and is leading the organizations next fundraising walk, in April. Eighty cents of every dollar raised goes to the foundations research, including the ongoing trials into the artificial pancreas, according to foundation officials.