Living life with type 1 diabetes: Justin’s story

little boy with an insulin pump

My name is Justin and I’m 9 years old. I’m a Cub Scout and I like to swim, ski, race my bike and play LEGOS — I love being active and hanging out with my friends. But last March, I got some unexpected news that was pretty scary at first. I was diagnosed with type 1 diabetes.

For about a month before I was diagnosed, I just wasn’t feeling right, but I couldn’t explain it. My parents noticed that something was up, too. My mom brought a bunch of bananas home from the supermarket and I ate the whole bunch in 12 hours! I was so hungry and thirsty all the time and kept going to the bathroom. I was also very emotional and just wanted to be with my mom all the time.

living with type 1 diabetes
With my sister

My moment of truth

Luckily, my mom used to work as a dietitian at Boston Children’s Hospital, so she knew it was time to for me to see

justin and shannon show off their insulin pumps
With my friend Shannon Torney

a doctor. We went to the emergency room there, and the doctors ran some tests. They told us that I have type 1 diabetes, which means that I need to test my blood sugar and be on a medication called insulin for the rest of my life.

At first, I was really scared. I was worried that I wouldn’t be able to keep doing all the fun things I enjoy. But the emergency room doctor told me that his best friend from elementary school had type 1 diabetes, too. He was also a Cub Scout — and he was able to do all the same activities as his friends.

That made me feel better, but it was still overwhelming. About 6 weeks after my diagnosis, my mom and I were having a snack and talking. It suddenly hit me: I realized that diabetes is my forever now. It was like my moment of truth — I was sad, but I also knew that I had to get through the bad parts of this to stay healthy.

A new approach

One person who has really helped me deal with diabetes is my friend Shannon Torney. She’s a diabetes nurse educator in the Diabetes Program at Boston Children’s. Shannon helps me and my family understand how to keep diabetes under control. She always answers our calls and emails and is so proud of me when my test results are good.

But more important, Shannon has type 1 diabetes, too. She knows what it’s like to have this condition — she just gets it. Plus, she inspired me to try a new way of managing my diabetes. Shannon has a continuous glucose monitor (CGM) and an insulin pump, which is a device that provides her body with insulin all day long so she doesn’t have to give herself shots.

My parents let me decide if and when I wanted to get a CGM and switch to a pump. I went to the Barton Center Day Camp last summer, which is a camp just for kids with diabetes. It was great to be around other kids who are dealing with the same challenges as me, and I even won the camp’s “Rookie of the Year” award! Plus, I met kids who had CGMs and insulin pumps and that sealed the deal. I was ready to try it.

staying active with a continuous glucose monitor

Giving and getting support

I have been using a CGM since August and then was ready to try a pump in December. I like that I don’t (always) have to worry about insulin injections. Even before I got the pump, I could still do all the same activities as before my diagnosis — this just makes it easier. In fact, I just got back from a ski camp called Riding on Insulin, which is run by a snowboarder who has type 1 diabetes! And I’ll be going to overnight camp at Camp Joslin this summer.

I want other kids to know that even though having diabetes is tough, you can still do everything you used to do, maybe just in a different way. My advice is to get a good team on your side, like your family, your friends and your doctors and nurses. My school nurse Mrs. Sforza, teacher Mrs. Thompson and school social worker Ms. Winters do an amazing job helping me manage my diabetes at school. They make me feel safe and comfortable when I’m there.

And get to know the type 1 diabetes community around you. I don’t like having diabetes, but I love meeting other people with the condition and especially talking to other kids with it. We support each other, and that’s really important.

Learn about the Diabetes Program.