Nina Kikel-Coury, Laura Carlson
Fighting to Control Diabetes
Each day while five-year-old Lucas Grisoli is at school, his parents, Kelly and Graham, wait for texts from his teachers every few hours. The teachers test Lucas’ blood sugar and send updates. If the sugar level is high, Kelly or Graham direct them to give Lucas insulin. If it’s low, Lucas can have some sugar to bring it back to an appropriate level. At home, Mom and Dad take over testing, counting carbohydrates, doing calculations for insulin doses. Managing Lucas’ health is a 24/7 job.
Lucas is a Type-1 diabetic. Kelly says that by some calculations, Type-1 diabetics make more than 150 additional decisions per day when it comes to diet, exercise, medication and more to keep their numbers in check. For young diabetics, that duty falls to their caregivers.
“On a day-to-day basis there’s so much that goes into managing his diabetes just from the standpoint of making extra decisions of, did he have all of his breakfast, lunch or dinner? How much exercise did he have?” Graham says. “All that can affect whether he’s going to drop low or stay high. So you’re constantly making extra decisions pretty much hour by hour.”
According to JDRF, the Juvenile Diabetes Research Foundation, 1.6 million Americans navigate life with Type 1 diabetes. Of those, 200,000 are under the age of 20. As of now, there is no known prevention and no cure. Instead, Type-1 diabetics must constantly keep their levels in check, typically with the help of insulin injections or a pump.
But glucose sensors require around the clock monitoring to prevent seizures, coma and even death. One nightmarish possibility from Type 1 diabetes is nocturnal hypoglycemia, or grimly, “dead in bed syndrome.” It occurs when a diabetic’s sugar level drops to fatal levels during sleep. Ever since Lucas was diagnosed at 12 months old, Kelly or Graham has dozed alongside him every night so they can hear the alert on his glucose meter. They also set alarms on their phones so they can check his levels at regular intervals. Neither parent has slept soundly through the night in years, and even so, the worry is relentless.
While a postdoc at MIT, Matt Webber, a Notre Dame graduate and associate professor of chemical and biomolecular engineering, started working on diabetes research. But it wasn’t until years later that he understood the stakes.
“I’d been doing work in the area of glucose-responsive insulin therapies. One night I had dinner with a colleague who had a young diabetic child and learned that that child had a problem with low blood glucose events happening overnight in her sleep,” he recounts. “As a parent of young children myself, I was really taken by how much stress and pressure this put on the parents of this child, to have to maintain her blood glucose overnight. Often they were spending many nights not sleeping, or sleeping in alternating shifts, in order to always be there and be ready in the event of a sudden drop in blood glucose.”
His colleague also expressed the pressure she felt to help solve this problem before her daughter leaves for college, because then she won’t be there to check on her through the night.
“As a parent of young children myself, I was really taken by how much stress and pressure this put on the parents of this child.”
On top of the health issues of the Type-1 diabetic children, Webber says some studies have shown parents of these children have increased risks of developing their own health problems, including depression, stroke and cardiovascular disease, in part due to the constant stress and lack of sleep. Inspired by the plight of his colleague and parents like her, and leaning on his expertise as a chemical engineer, Webber started to wonder if he could create technology that would sense a drop in blood sugar and automatically administer life-saving medication as needed.
“Currently, there are technologies that can monitor blood sugar and medications that can reverse the onset of low levels. But the challenge of doing both of these things, falls to parents or diabetics themselves,” Webber says. He explains that many Type-1 diabetics carry a rescue kit of glucagon, a hormone that raises blood glucose level. When blood sugar reaches dangerously low levels, the diabetic or caregiver can administer the medication to rapidly raise their blood sugar. “Our hope is that our technology can remove some of this burden from individuals and their caregivers, and instead use material-based approaches to deliver therapeutics at exactly the time they are needed,” he says.
Webber’s work to develop new technologies to control blood glucose is supported by the Leona M. and Harry B. Helmsley Charitable Trust, the American Diabetes Association and JDRF. The vision for the emergency glucagon device is a gel that could be applied to the skin before bed. It would sense a drop in blood sugar and release glucagon as needed. It’s like an insurance policy, Webber says, to ward off hypoglycemic episodes.
So far, the results are promising. Webber says his group has effectively synthesized glucose-sensing molecules. They have developed several different materials to automatically administer the glucagon therapeutic. And they have early data that shows this technology can prevent severe hypoglycemic episodes in diabetic mouse models. But he’s quick to add there’s room for improvement and his technology is still years away from being available for use, much to the anguish of Type-1 diabetics and caregivers. He knows, because he’s in contact with many of them.
But there’s hope, he says. And Notre Dame has given him a place to do this research and to partner with others who are similarly inspired to improve lives.
Hope sustains families like the Grisolis.
“I always say we have realistic hope — hope that they’ll find a cure, or a functional cure, or new technologies. New therapies are going to come out that are just going to better Lucas’s life, and make him safer and healthier,” Kelly says. “The research that Notre Dame is doing with Professor Webber, I think it’s something that would be invaluable. It’s something that you can’t even put into words, something that could protect him, and keep him safe when we can’t be there.”
Graham adds, “It would be a wonderful additional insurance policy just to have that extra peace of mind that if I do sleep through that alarm, that alert before low blood sugar, there’s something there that can protect him if I can’t. And I hate to think that I can’t protect him, but to have that would mean the world to us.”
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