One patient’s story: rustling diabetes's feathers

Noah is one of the 23.6 million Americans with diabetes.

In September of 2007, my son Noah started first grade. He was very excited, but after a few weeks of school, I noticed he was acting more and more tired all the time. After a few weeks, it seemed like all he did was sleep: falling asleep in the car to and from activities, dozing off while watching TV, he once even fell asleep on the bleachers at a baseball game. As parents we knew kids Noah’s age needed more rest to grow, but the extreme fatigue was starting to worry us. Pretty soon it was apparent that a trip to the doctor was in order.

The doctors gave him a thorough exam, but couldn’t really explain what was causing his lack of energy. Next we noticed that he started complaining about being thirsty all the time, and then one night he started wetting the bed. At first we thought he was just nervous about first grade and the night wetting would subside, but it got worse as time went on. One night he was up almost every twenty minutes to go to the bathroom, but still managed to wet the bed over and over again. He was standing there in tears while I changed his bed, just crying and saying how tired he was that he didn’t know what was wrong with him; it was heartbreaking. The next morning we called his doctor again and told them that we thought something was really wrong with our son. They told us to come in right away.

By the time we reached the doctor’s office Noah was not only exhausted and lethargic, but complaining about how cold he was. The doctor weighed him, and much to my surprise he was seven pounds lighter than he had been a few months ago. Until that moment we hadn’t really noticed it, but as we looked at our son— cold and frightened on a doctor’s examining table— we realized how fragile looking he had become.  They immediately did a urine test and pricked his finger to check his blood sugar, which was over 600.  His doctor told us this was a very high blood sugar level and that it was likely that Noah had Type 1 diabetes. She also told us that because of his elevated blood sugar level, Noah needed immediate treatment. Before I knew it, we were in the car en route to Children’s Hospital Boston, as fast as we could go.

One of Noah's awareness raising flamingos

As he sat in the back seat of the car we realized just how thin and cold he was. He seemed almost lost in his bright orange winter coat and black knit cap. As we drove I secretly hoped there was going to be an easier, quick-fix explanation for his condition, but the more I thought about it I couldn’t deny how well all the pieces seemed to fit. He was rushed into the emergency room at Children’s and they confirmed the diagnosis that we knew would change his life forever. He had Type 1 diabetes and he had diabetic ketoacidosis, meaning that his kidneys were in really bad shape.

The doctors and nurses at Children’s knew exactly what to do and quickly got Noah’s blood sugars down to a manageable level. It saved his life.  Within 8 hours of arriving, Noah was back to normal and asking questions about what he needed to do to stay healthy.

The doctors explained to us what Diabetes was, what it did, and that Noah was going to be fine. The only catch was he would need insulin injections for the rest of his life.  We were assigned a wonderful support team of doctors and nurses that taught us more about diabetes in three days than we learned in our entire lives.

This month, Noah celebrates his three year anniversary of being diagnosed with diabetes.  Thanks to his “team” at Children’s he’s playing soccer, baseball, and doing all the other things 9 year old boys seem to love. Noah now wears an OmniPod Insulin pump to help maintain his blood sugars and still checks his sugar six to 10 times a day; it can be a chore, but he knows it’s needed to keep him healthy.

These days, in addition to the soccer field or baseball diamond, you can usually find Noah spreading diabetes awareness. He even started a national diabetes awareness campaign using special blue flamingos that he sends all over the country to help educate and call attention to diabetes and its treatment. Noah is affectionately nicknamed, “The Diabetes Dude,” and his hope is to put a blue flamingo in every state in America.

Noah’s collection cup. He donates all the money he raises to Children’s.

Every chance Noah gets, he likes to give back to Children’s Hospital Boston. He donates toys, coloring books and other items by hosting collection drives and using money he ‘earns’ from his diabetes treatment. (For every time he pricks his finger to test his blood we give him a penny, for every injection a nickel, every OmniPod change he earns a dime and we give a dollar each time he has blood drawn.) Once he collects enough money, Noah heads to the store to buy things for kids receiving care at Children’s. He’s even got his sister in on the act. At Noah’s request, she asked all the guests at her Sweet 16 to donate toys to Children’s Hospital in lieu of gifts for herself.

Most kids fear hospitals, but every time Noah walks into Children’s, he does so with a big smile on his face. He considers the hospital a second home and is forever grateful to them for saving his life.