Justina Ravenstein is an all-American girl. The 11-year-old fifth grader just got braces, and she has a mischevious twinkle in her eyes, framed by a wash of freckles.
Dashing across the playground or giggling with friends, it’s not obvious that she also has what some might call the All-American disease – diabetes.Justina, who lives in Decatur with her parents Kurt and Melissa Ravenstein, was diagnosed with type I diabetes in August. She is one of the 25.8 million children and adults in the United States with the disease.
“But I don’t like the word ‘disease,'” Justina said. “It’s scary. I like ‘condition.'”
She said she was scared when she was first diagnosed.
“I didn’t know what it was or how to control it,” she said.
Melissa suspected something might be wrong with her daughter during the summer because she wasn’t acting like herself. Justina’s symptoms became more obvious in August. She and her siblings, Chaude, 14, and Cash, 6, stayed with a babysitter while Melissa and Kurt went on a three-day trip.
While they were away, Justina felt irritable and couldn’t stop drinking water.
“She drank a case of water in two days, and she doesn’t even like water,” Melissa said.
Justina said her stomach felt full but whenever she quit drinking water, her mouth felt fuzzy, and she found herself guzzling more.
When her parents returned, Melissa tried to take the kids school shopping, but Justina wouldn’t eat and was nauseous.
Melissa said she decided to test her daughter’s blood sugar, and the numbers were so high, they rushed to the emergency room. Wise Regional Health System confirmed the family’s suspicion – diabetes – but sent her on to Cook Children’s Hospital in Fort Worth for further diagnosis and treatment.
“It was about 2 a.m. when they came in and told us for sure it was type I diabetes,” Melissa said. “And by 8 a.m. dieticians, social workers, doctors and nurses were visiting us. It was constant training.
“I’ve learned a lot of stuff I never wanted to know.”
After three days, the family was sent home, and Melissa and Kurt felt alone, navigating this new disease and their daughter’s well-being. But they were greeted at their house by neighbor Terri Johnson.
Johnson, who is Precinct 2 justice of the peace, was diagnosed with late onset of type I diabetes in December 2006, and she knew just what to say to ease their minds.
“She came right down and showed Justina her [insulin] pump and basically said, ‘Hey, this is tough, but you’re going to be OK,'” Melissa said. “She’s been Justina’s angel, for sure.”
Johnson said when she was first diagnosed, she thought she was just tired and overworked. It came at the end of a long campaign season when she was first elected to office, and even the doctors first thought she simply needed to rest. But after a few days, she couldn’t get off the couch.
“My pancreas had quit,” Johnson said. “I was shocked. At that time I was running, eating and exercising. I didn’t think I fit the mold.”
She said it’s a common misconception that the patient has done something to cause the onset of type I diabetes. In fact, the body quits producing insulin, which it needs to convert sugar, starches and other food into energy for daily life. The pancreas simply quits working, and there is no cure at this time.
Melissa said she’s fielded all sorts of questions. People want to know if Justina will outgrow her diabetes or if she got the disease because of her eating habits.
Johnson said even though she’s dealt with the disease for six years, she’s still learning about it and how she can better take care of herself. She also considers it a great responsibility to share her story with others.
“The more you share … it’s a comfort to others. To let them know you can do it,” she said. “It’s not the easiest, but it can be managed.”
Last year Johnson visited Washington, D.C., and participated in the American Diabetes Association Summit, Call to Congress.
Oddly enough, the Ravensteins moved to Decatur and into Johnson’s neighborhood just before she was diagnosed, and Johnson was the first to welcome them with a basket of goodies.
Melissa said the entire family is adjusting to Justina’s condition, and at times it can be overwhelming.
“I don’t think it hit me for a while,” she said. “But the second time that I went to pick up her supplies at CVS, I knew it was for real.”
One of the most difficult things has been regulating her blood sugar while playing volleyball. She’s required to test her blood before playing and during the games as necessary. She also has to test it before every meal, before bed and when she wakes up.
Melissa said they test her blood seven to 13 times per day. They’re beginning to recognize the signs when her levels are low, too. Justina said her legs get shaky, and she feels confused. Her mom added that she also gets irritable, but sometimes it’s hard to tell if that’s a diabetic symptom or side effect of being a kid.
“When she gets grumpy, I tell her, ‘Come here. Let’s see if you’re going to get a spanking or a juice,'” Melissa said with a smile.
All of her friends have been supportive, and some of them have even worn blue strands in their hair in recognition of Diabetes Awareness Month, which started Nov. 1.
This week, Justina was scheduled to get an insulin pump, meaning she will receive a slow drip of insulin throughout the day and will no longer have to give herself shots.
Melissa said the family decided in the hospital that diabetes wouldn’t slow down Justina or her myriad of activities. She remained competitive in volleyball and plans to start basketball season soon.
“Once she started insulin, it was like she came back to life,” Melissa said. “She has strength that I didn’t even know she had. She’s really grown up a lot.”
For more information about diabetes, visit the American Diabetes Association website at www.diabetes.org.