On a sunny morning in Poway, a little boy named Gavin scampers around his backyard as his mother looks on. To the unassuming eye, this lean, blue-eyed towhead looks like any other fit four-year-old. But upon closer inspection, one might notice the sun glinting off his small silver anklet; when Gavin clambers up the side of his wooden play set, a white adhesive bandage can be seen on the back of his arm; as he wriggles his way down the plastic slide, his shirt rides up, revealing a tiny fanny pack around his waist. Each item is part of a collection of equipment that helps keep Gavin alive.
Gavin has type 1 diabetes. Unlike type 2, a metabolic disorder often related to poor diet and lack of exercise, type 1 is an autoimmune disease. There is no cure and no known way to prevent it. Nor is there a way to predict who will get it or when. “Gavin was a healthy, thriving baby,” says Sage Pierce, Gavin’s mother. “I breastfed him until he was a year old and then fed him organic baby food. He was a pretty darn healthy kid — no colds, no ear infections, nothing.”
When Gavin was 14 months old, Pierce started noticing “weird” things. “He would wake up in the morning and his lips would be blue.” When she asked her pediatrician about this, she was told her son might be cold in the morning. A few months later, Gavin began wetting his diaper three or four times a night. “Like, dripping wet, we’d have to change the sheets,” Pierce remembers. “I thought, Is this normal? I’m a new parent, I have no idea.” The doctor recommended larger diapers.
Commonly referred to as T1D, type 1 diabetes lies dormant until it is triggered, most often by something as simple as a cold. When we get sick, our immune system responds by leaping into action and killing the invading cells. For people with type 1 diabetes, this process malfunctions and the immune system targets, attacks, and kills crucial beta cells, which are the only cells in our bodies that create insulin, the hormone that delivers the precious energy source, glucose (i.e., sugar), to the cells. Without insulin, glucose builds up in the blood, depriving most cells and organs in the body of the energy they need to continue functioning. As a result, the body believes it is starving and begins processing fat for fuel, which creates acidic biproducts known as ketones. As these ketones build up, the body tries to rid itself of the extra toxins, primarily through urine. If the level of ketones gets too high, the consequences are dire: one could fall into a diabetic coma, or die.
What Pierce did not know at the time, was that Gavin was exhibiting the most common symptom of life-threateningly high blood sugar: excessive thirst, followed by frequent urination. The disease itself (technically known as diabetes mellitus) is named after this symptom. Diabetes comes from the Greek word for “siphon,” and mellitus from the Latin word for “honey.” In China, diabetes was dubbed the “sweet urine disease” after it was observed that sugar-loving insects such as ants were attracted to some people’s urine.
When Gavin was 18 months old, he traveled with his family to Detroit for a wedding and caught a terrible cold. Upon returning home, he was constantly thirsty. “He’d drink a whole sippy cup and then ask for another one,” Pierce says. “It got to the point where I emailed the doctor and said, ‘Something’s not right.’ We brought him in for blood tests on a Friday, when there weren’t any doctors, just the lab, and then we went home for the weekend, like it was no big deal.”
On Monday, November 14, 2011, Pierce received a call on her cell phone while she was at work. It was a nurse, informing her that Gavin’s test results indicated he was diabetic and she needed to bring him to Rady Children’s Hospital immediately.
Pierce, an executive producer for NBC San Diego, recalls that moment.
“I was sitting there in the newsroom, like, what? In my mind, diabetes meant type 2 — my grandmother died of type 2. I was, like, This kid’s skinny, he eats healthy, what the hell? My stomach was just falling and I was crying at my desk. I called my husband, and he didn’t even know type 1 was a thing.”
At the hospital, Pierce, her husband Mike, and Gavin sat in a room as blood and urine tests were processed. “I don’t think Mike knew of the severity of what was coming, but I knew — I saw those five doctors talking in the other room and I started panicking.” One of the doctors returned to explain that Gavin’s blood sugar level was 700 milligrams per deciliter and that it was supposed to be around 100. “There was no outward indication, nothing,” Pierce says of Gavin’s appearance at the time. “He was acting normal — exploring the office, looking at planes out the window. And they were telling us he needed to be admitted.”
At 18 months old, Gavin was one of the youngest people to be diagnosed with type 1 diabetes in San Diego County. Failing to choke back her tears, Pierce weeps openly as she recalls what happened next.
“They were putting an IV in him, and there he was, in his diaper, and they strapped down his arms and legs, and he was crying. The doctor said his blood sugar was so high he could go into diabetic ketoacidosis, which meant he could go into a coma or die. I remember running into the bathroom and throwing up, because I just didn’t know what was going on with my baby.”
“When I have my initial meeting with a family, I have several objectives,” says Dr. Michael Gottschalk, chief of the pediatric endocrinology division at Rady Children’s Hospital. “One is to help them understand the basic physiology of what diabetes means — how blood sugar is regulated, what you need the glucose for, why it’s important — to help them understand what’s going on from a biological point of view. That also then helps segue into what needs to be done in terms of treatment, that we need to replace insulin that the body’s no longer able to make.”