When third-grader Ava Rao was diagnosed with type 1 diabetes, it changed life for her whole family. Now a high school freshman, Ava and her dad, cardiologist Sunil V. Rao, MD, share their perspectives on the disease and hopes for the future. 

Dad & doctor

For most of my career, when I thought of diabetes I was really thinking about type 2 diabetes. The majority of my patients with diabetes have this form of the disease. This all changed when my daughter Ava was diagnosed with type 1 diabetes at age 9. All of our lives changed that day. We all had to adapt to ensuring that her blood sugar didn’t get too low or too high. 

There were missteps. She once had a blood sugar of 32 g/dl at school and couldn’t see well enough to make it to the nurse’s office. One of her classmates had to run and get the nurse. She also had several blood sugars that were so high that the glucometer didn’t register them and just read “HIGH.” For three years, we checked her blood glucose every night at 2 a.m. During those early days, my wife and I marked time by the meal Ava was eating, her blood glucose value before the meal and the dose of insulin she needed. 

Despite our familiarity with the long-term adverse effects of poorly controlled diabetes, we actively avoid thinking about that with our daughter. We focus on day-to-day control of Ava’s glucose in the context of a busy high-schooler’s life. 

As a cardiologist, I counsel patients with diabetes on their long-term risks of macrovascular and microvascular disease. I used to dispassionately and analytically tell patients to control their blood glucose as if it were as easy as brushing their teeth. Since Ava’s diagnosis, I’ve come to understand how patients are trying to integrate diabetes into their own lifestyles. My conversations now are less one-sided. The recent developments in the treatment and prevention of diabetes make me optimistic about the future for patients and my daughter.

Teenager with diabetes

I remember feeling sick in the weeks before my diagnosis. I was really hungry and thirsty all the time. On the day I was diagnosed, I came home from school early and my mother took me to urgent care. They checked my urine, and my mother started to cry. From urgent care, we went to a drug store, where my mother bought toys. I thought, “Something serious is going on.” The week before, a friend had mentioned diabetes, describing it as a “disease with no cure.” [[{"fid":"23938","view_mode":"media_original","type":"media","attributes":{"height":690,"width":478,"style":"width: 156px; height: 225px; float: left; margin: 10px;","alt":" - Ava M. Rao 2","class":"media-element file-media-original"}}]]

From the drug store we drove to the hospital. A nurse drew my blood and put in an IV. The doctor talked to my mother, who was still crying. When it was just my mother and me in my room, I asked if I was going to die. She assured me that everything was going to be ok. 

Over the next several days I endured a lot of blood draws, but it was not all bad. My cousin and grandparents came to visit me, and I got quite a few presents. 

Since my diagnosis, I try to balance my diabetes, schoolwork and extracurricular activities. I have to be very organized and think about how every decision will affect my blood sugar. It is a daily battle. You don’t get sick or vacation days, and you definitely do not get summers off. The worst part about diabetes is that it does not care if you are in the middle of your SAT or just about to finish your race or about to go out to dinner. Sometimes the only thing you can do is wish for stability. The best part is that you are never alone. The reality is that childhood diabetes is way more common than we think. It helps me to know that there are other kids having the same experience as me.  

I know about the potential consequences of poorly controlled diabetes, but I try not to think about it. I focus on keeping my blood sugar in a good range on a daily basis. It can be tough—I used to be the only child with diabetes at my school. My biggest worry is when I have to rely on my gut instinct to dose my insulin or count carbs and I wonder if I’ve done it correctly. 

My parents talk to me a lot about research in diabetes and how quickly it is progressing. We’ve heard many times that there will likely be a cure during my lifetime. I certainly hope that’s true.