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Living with Diabetes

The fight of her life: it's easy to fall into the self-pity trap when you feel sick. But that's not what Caroline Rowley, 15, did when she found out she has diabetes.
 
Here's her awe-inspiring story of how she decided to do something about finding a cure for an illness that affects millions.

I was six when my grandmother became worried about me. She noticed that I was sleeping constantly, frequently going to the bathroom, and losing weight even though I was eating tons of food. She mentioned to my mom that she thought I might have diabetes. My mom figured that was impossible since no one in my family had it, but she took me to the doctor to get me tested anyway. Sure enough, I had diabetes Type 1.

At the time, I didn't know what diabetes was, so I figured it was like a cold that I'd get over in a few days. But I wondered why my mom was so upset. I didn't realize at the time that there is no cure for diabetes.

LIVING WITH IT

Some days, I thought, "Why me? This is so unfair!" But I've learned to accept it. Complaining won't get rid of my illness. The good news is that no one has ever teased me about my diabetes, but kids do ask me a lot of questions. I think they're just curious, because none of them had ever met someone with this disease before me. And neither had I.

It's hard to describe how diabetes feels but, basically, when my blood sugar is low, I get cold sweats or dizziness. When my levels are high, I can't concentrate at all. I carry a diabetes kit with me, which has a small "penlet" to prick my finger plus a little computer for testing my blood. I prick my finger, put the blood on a test strip and stick it in the "glucometer" for a reading. If it shows that I need insulin, I have to get an insulin shot right away.

I still do the same activities as other kids in school--but with some limitations. Recently, I was doing laps during soccer practice and my blood sugar got really high, so I had to stop running. Kids just look at me like, "You're so out of shape!" Not exactly. I also can't eat a lot of the foods in the cafeteria, like pizza or chocolate or soda, because they make my blood sugar levels go crazy. But I really don't mind. If I want to be healthy, that's what I have to do.

GETTING ACTIVE

The biggest turning point in my life regarding my illness happened in second grade. A blind woman came to visit my class to show us her guide dog, and she briefly mentioned she had to take shots every day. When I heard that, I ran up to the teacher and said, "Can you ask her if she has diabetes?" It turned out she did but, at that time, I had no clue diabetes could cause blindness. After school, I ran home to my mom and said, "When I get a guide dog, can it be an Australian shepherd?" My mom was stunned. She explained that it was true that if I didn't take care of my diabetes, I could become blind, lose a limb, get heart disease or have kidney failure.

But, she also explained, if I continue to take care of myself, I can have a normal life. It was emotional for both of us, and we decided then and there to do what we could to help find a cure.

Soon after that, we learned of the upcoming First Children's Congress of the Juvenile Diabetes Research Foundation (JDRF). A diabetic child from each state was to be chosen to go to Washington, D.C., to push for research funding. To "audition," I had to write a letter to my congressperson asking for research money. I was so determined to go that I got 1,000 people from my community to write letters! It was exciting when my morn and I were picked to go to the capital. We spoke to members of Congress about what it's like to have diabetes.

During that trip, I met Texas congressman Ken Bentsen, and we're still friends. Two years ago, when President Bush was deciding to ban stem cell research, Congressman Bentsen invited me to a press conference in Houston to speak about how stem cell research could be our best hope for a cure.

The Second Children's Congress was held when I was 11, and my mom was was chosen to be chairperson. We met tons of legislators. We'd walk into their offices and tell them how research funding might make my life normal.

But nobody wanted to discuss the controversial issue of stem cell research. You see, stem cells come from unused embryos and discarded umbilical cords. One congressman told me he was against stem cell research because he felt embryos have a right to their lives. So I said, "Don't I have a right to my life?"

When I was asked by JDRF officials to speak before Congress at age 12, I was ready and excited. It was such a rush! I was on CNN Live and C-SPAN, so all my friends watched me on TV. I felt like I had really accomplished something. I think I helped put a face on diabetes. I also think more people know about the great need for stem cell research--not just for diabetes but many other diseases, like cancer, Alzheimer's and Parkinson's.

As Told to Sandy Fertman Ryan

POSTED ON 11/25/2009 7:00:00 AM

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