“This Device Means Rory Can Live Like Any Other Kid”

Above: Rory Mansfield has type 1 diabetes but lives a normal life, says his mother, Betsey Monaco, a pediatrician. Ed Damiano, research professor of biomedical engineering at Boston University, coinvented the iLet Bionic Pancreas, an automated insulin delivery device.

Rory Mansfield has type 1 diabetes, but these days he can visit a friend’s house, play soccer, and eat what he wants—like any other kid. It’s all thanks to the iLet Bionic Pancreas—developed in a BU lab by engineering professor Ed Damiano—which automatically delivers just enough insulin to correct the user’s blood sugar.

Rory’s mother, pediatrician Betsey Monaco, says she and her husband, Paul Mansfield, lost a lot of sleep testing blood sugar levels, giving injections, and just worrying about Rory and his brother Frankie, who is also diabetic. Then, in 2023, Rory got the iLet from Beta Bionics, a company Damiano cofounded.

Monaco talks to Damiano about how the iLet allows Rory to live a more normal life. Damiano began conceptualizing the device in 2000, after his infant son was diagnosed with type 1 diabetes. He began preclinical testing at BU in 2005 and clinical trials, with Dr. Steven Russell, in 2008. Damiano is delighted that, in the short time the device has been commercially available, it has already helped thousands of families like Monaco’s: “The project has been more rewarding than I ever imagined.”

ED DAMIANO: You and your husband had been responsible for every dose of insulin your son received. And you put him on a device that is autonomously responsible for the doses he would receive?

BETSEY MONACO: It was definitely—especially for me, as a physician—a total release of control. And it was terrifying and amazing—all in the same moment. We really wanted something that was going to give him the life that other kids have, to just be able to turn it on and let it do its thing.

Many people struggle with that, at least in the first few weeks—with giving up that kind of control, which, until the iLet became available, was essential to the well-being of your child.

The first time, it was hard for me and it was scary, but we found that it worked, and it didn’t take more than a couple of days for us to get comfortable with the idea that there’s tech out there that can do this—these guys have figured it out, and here we are. It’s hard to leave kids with diabetes, and so it was hard at the beginning with the iLet, too. But we all pretty quickly got pretty comfortable because it just worked.

What was it like when both of your boys were diagnosed with type 1 diabetes?

It was certainly new and totally life-changing for our family. Frankie, Rory’s older brother, got diabetes when he was four, and life got a lot harder in terms of taking care of him and just letting him do things that kids need to do in school and sports and after-school activities. And when Rory was diagnosed a few years later, it was the same thing.

I remember once you made a comment that even as a physician, you’re scared to give too much insulin. Is that right?

My husband’s an engineer and I’m a physician, so between us, the physiology and the math, we’re both really good at those things. There’s a lot of both of those in managing type 1. And I don’t know how people without that background do it because it’s definitely tricky.

How did it feel, as a parent, to live with this chronic illness?

Even though I was a physician and understood it all pretty well, I didn’t understand what it would feel like to leave them at a friend’s house or send them to school or any of those things. I remember talking about it with Paul, how we were just never going to sleep again. Correcting blood sugar, especially overnight, is hard. It’s not an easy way of life.

Frankie experienced the iLet in a large, clinical Boston University–funded study. He was possibly the youngest person in the trial at six years old.

We had an endocrinologist who’s a colleague of mine, and when the iLet started clinical trials, she said, “Do you want me to connect you?” And I said, “Absolutely.” Frankie was only six, so I said [to him], “Do you want to do this? Because you’re going to have to get your blood drawn and I don’t know what this device is going to do.” And he said, “If this might be better than what I’m doing now, sign me up.”

How do the boys feel about the iLet?

The iLet makes them feel more like typical kids. They don’t have to worry about what they’re eating and how much of it or about doing the things they’re used to doing with their friends.

“The iLet makes them feel more like typical kids.”
—Betsey Monaco

Frankie’s trial ended at 13 weeks and you had to turn the device over. What was that like?

I literally cried the day we had to give it back. That was a huge backward step for us. His hemoglobin A1C—an indicator that gives a sense of average blood sugar levels over a period of time and, thus, how well those levels are being controlled—is a marker we follow in kids with diabetes. Frankie’s was the lowest it’s ever been. Rory’s A1C has also come down. This device helps to keep their blood sugar within target ranges all the time.

The trial ended at the end of 2021 and the iLet didn’t come to market until the middle of 2023…

In that year and a half, Rory was diagnosed and started on injection therapy. He also went on a different pump briefly. As soon as the iLet became commercially available, I was asking for it. Rory was [our hospital’s] first pediatric patient to get it. Frankie wants to switch back to the iLet. So I think we will do that.

What are the implications for the broader population?

The nice thing about the iLet is that anyone can do this right. For the diabetes community, to have a device that makes life as close to normal as possible is huge.

Is it going to change the boys’ lives?

I think so. I hope so. One thing I’ve seen as a physician is the health complications diabetes presents later in life. A lifetime of high blood sugar can do a lot of things to your body. And these kids are the first to have the benefit of such good control from day one. They will be healthier in the long run, and it allows them to live a more normal life. I’ll always be keeping an eye on them, but the device definitely makes it easier for them to live their lives.