Najila Miles is quite an active 9-year-old. She’s in Girl Scouts, is a cheerleader for a youth football league and wants to start swim lessons this summer.
If you didn’t notice the plastic patch attached to a narrow tube on her upper arm or the beeper-sized pump it’s attached to, you probably wouldn’t think there was anything unusual about this Ahwatukee Foothills girl.
But every day, Najila has to keep track of what she eats. She visits the nurse at Kyrene de la Estrella Elementary School regularly to check her blood sugar. And for a year, she was giving herself insulin shots four times a day.
Najila has type 1 diabetes, a disease that attacks the pancreas and prevents production of insulin. About 3 million Americans are affected by the disease, and 15,000 children are diagnosed every year, according to information from the Juvenile Diabetes Research Foundation.
Najila was diagnosed last February. She and her mother, Raquel Boone, have spent the past year learning how to measure her blood sugar, inject the right amount of insulin, keep track of how her body is metabolizing sugar, and recently, how to use her new insulin pump.
“I’ve learned a lot about the littelest things you eat and how they can affect your body,” Boone said.
Families do go through drastic changes when a child is diagnosed with diabetes, since not taking care of the illness can mean major complications or even death, said Khalid Hasan, a pediatric endocrinologist at Phoenix Children’s Hospital.
“A kid’s life does totally change, unfortunately,” Hasan said. “This is a long, drawn-out condition. It’s chronic. Kids will have to be on treatments until we find a cure.”
The cause of type 1 diabetes is a bit of a mystery, but it is some combination of genetics and environment, Hasan said.
Basically, diabetes is the result of the autoimmune system attacking the pancreas, which gets so damaged that it can’t make insulin. Since their bodies aren’t making insulin, type 1 diabetics must learn how to regulate sugar levels on their own or they are at high risk for things like blindness, circulatory problems that can result in amputations or even slipping into a coma, Hasan said.
“Unfortunately, you can’t make the risk a zero,” Hasan said. “Even with good control, some kids will have problems.”
These are all things that Boone and Najila learned after she was diagnosed. Najila was urinating frequently — about once every 20 minutes — and looking sickly, which prompted Boone to take her to the doctor.
“She didn’t feel sick, but she looked sick,” Boone said, “She was very hungry, but she wasn’t gaining any weight. That was tough to watch.”
Boone knew a few people in her extended family had diabetes, but tried to put that thought out of her mind. When the doctor gave her the diagnosis, she started to wonder how they would manage the disease when the rest of her family lived in another state.
Najila was calmer.
“She never once cried,” Boone said. “More or less she took it all in and said, ‘I just have to take this medicine.’”
And then, Najila told her she only had to worry about the disease until the “c” word happened, the one the doctor talked about. It took Boone a minute to realize Najila was referring to a cure.
“It was at that moment that I felt like, OK. I’ve got this,” Boone said.
Najila had to start taking injections four times a day and pricking her finger several times a day to check her blood sugar. A week or so after the diagnosis, Boone let Najila inject herself while she supervised.
And she got an insulin pump a few months ago that gives her a slow, steady flow of insulin, which Najila says is an improvement.
“I don’t have to take shots every day,” Najila said.
As long as she manages the disease and figures out how different activities affect her body, Najila can do just about anything. For instance, she planned to go to a birthday party over the weekend, and would be able to eat cake and ice cream as long as they accommodate it with the right amount of insulin.
She’s also become involved in activities with the Juvenile Diabetes Research Foundation. Activities like a diabetes walk at Halloween and game nights have another benefit for Najila.
“I get to make friends that don’t have the diabetes and who do have diabetes,” she said.
The main purpose of JDRF, though, is to find a cure for the disease. There’s a lot of research focused on beta cell transplants, which would let the pancreas start to make their own insulin again, said Gary Pederson, an advisory board member for the Desert Southwest chapter of JDRF and a longtime Ahwatukee resident.
There’s also promise to introduce an artificial pancreas, which would be an insulin pump and a continuous glucose monitor that could share data with each other and continuously regulate blood sugar, Pederson said.
Pederson knows about the difficulties of having a diabetic child first-hand: His daughter, Alexa, was diagnosed when she was 4.
Alexa is now 21 and managing the disease, but Pederson still remembers getting up in the middle of the night to test Alexa’s blood sugar when she was yong.
“It’s pretty intense,” Pederson said. “You have to be on your guard 24 hours a day.”
If you don’t regulate blood sugar, he said, it’s like “running acid through your system.”
”We were pretty fortunate that our daughter Alexa has turned out to be a very responsible young lady. Having diabetes requires you to become responsible very young,” Pederson said. “It’s pretty impressive to see a 5-year-old stick a needle in her own arm and give herself injections.”