Two weeks before a family vacation last spring, 10-year-old Hailey Evans started to drink a lot more water. Her parents didn’t think much of it, given that Hailey had just joined a running team at her school in Northern Virginia and was exercising more.
Not long after landing in Bolivia, where one of Hailey’s grandparents lives, she complained of a stomachache and nausea. Altitude sickness, her parents figured.
Then Hailey took a sudden turn for the worse. Hospitalized the next day, she was diagnosed with Type 1 diabetes within an hour. A few hours after that, she was in coma caused by swelling in her brain and severe dehydration. The next morning, April 20th, Hailey died, two weeks shy of her 11th birthday.
Hailey’s devastated parents, Vanessa and Derrick Evans, now have joined a growing chorus of voices determined to raise awareness of Type 1 diabetes and push for more regular blood sugar testing. While Type 1 diabetes is the second most common chronic illness of childhood—trailing only asthma—it can mimic other common ailments and often is missed until it has taken a potentially deadly turn.
“We had no idea,” Vanessa Evans says. “I wish I would have known, because maybe taking her to the doctor sooner would have saved her life. I would have never thought this could happen to anyone, much less us, yet here we are, left without our beautiful daughter. I don’t wish this pain on anyone. As we learned the hard way, with this disease, every minute, every hour, every day counts.”
Cases of Type 1 diabetes are increasing worldwide, particularly in young children. Warning signs can include extreme thirst, frequent urination, a fruity breath odor and blurred vision, as well as generalized symptoms such as fatigue, nausea, stomachache, appetite changes and weight loss. Kids have been misdiagnosed with viruses, acid reflux, strep throat, sinus or urinary tract infections and more.
“There can be a whole constellation of symptoms, many of them flu-like,” says Dr. Steven Griffen, senior vice president of Research at the Juvenile Diabetes Research Foundation.
If you’re not thinking Type 1 diabetes, it’s not that hard to miss.”
Type 1 diabetes develops when a patient’s immune system mysteriously destroys pancreatic cells that make the hormone insulin, which regulates blood sugar levels and helps cells use the sugar glucose for energy. While still incurable, the disease can be effectively managed with daily insulin injections or pumps. Untreated kids, however, are at risk for a life-threatening condition called diabetic ketoacidosis (DKA). DKA develops when glucose-starved cells trigger a process that makes blood more acidic.
“So many people are ignorant,” says Darice Oxendine, a North Carolina mother whose 16-month-old daughter, Reegan, died of DKA in 2014 and inspired a first-in-the-nation bill that encourages doctors in the state to review symptoms with families. “It’s torture, knowing that something could have been done for Reegan. And I knew that if it happened to us, it’s going to happen again.”
A Rising Health Concern
Cases of Type 1 diabetes are on the rise worldwide, according to the Centers for Disease Control and Prevention. About 1.2 million Americans—200,000 younger than 20—are living with the disease. Unlike Type 2 diabetes, which tends to develop in adulthood and is linked to obesity, poor diet and lack of exercise, Type 1 almost always appears before age 40. Half of patients are diagnosed by 18.
By 2050 in the United States, cases in children and teenagers are predicted to more than triple, with the average age of diagnosis apparently decreasing, Griffen says. The jump is too large to attribute to genetics alone; a list of still-unproven hypotheses include environmental factors, changing diets, vitamin D deficiencies, earlier introduction of cow’s milk, less exposure to germs that occupy the immune system and overuse of antibiotics that can alter bacteria in the digestive system.
In one city alone, Philadelphia, Pennsylvania, the incidence of Type 1 diabetes in children younger than 5 has more than doubled since 1985, according to a comprehensive registry developed by Terri Lipman, Ph.Dm, Professor of nutrition and professor of nursing of children at the University of Pennsylvania School of Nursing. Lipman believes the registry is a microcosm of what is happening nationwide.
The disease’s mortality rate is highest in babies, toddlers and preschoolers, due to delayed diagnoses and greater vulnerability to dehydration, Lipman says. “Young children are unable to articulate some of the symptoms of Type 1 diabetes,” she explains. “Also, it is more difficult to quantitate a classic symptom—excessive urination—in a child who wears diapers.”
The time between first symptoms and a life-threatening crisis depends on how quickly each patient’s immune system destroys cells in the pancreas. However, the process tends to be more aggressive in younger children, Griffen says.
Reegan Oxendine’s story is a heartbreaking example. Reegan was a healthy and joyful 14-month-old when she lost her appetite and began vomiting. Her doctor first diagnosed a virus, then acid reflux; Reegan took medication for reflux for several weeks. “Then one day she started panting, kind of like a dog,” Darice Oxendine recalls. “Her tongue was out.”
Reegan’s untreated diabetes had progressed to DKA, as her body desperately began to burn fat for energy. That fat-burning process produces toxic chemicals called ketones, which can make blood so acidic that it poisons the body and brain. Reegan passed away in September 2014, after a six-week struggle in the hospital. “She fought for as long as her little body could,” Oxendine says.
By April, Oxendine had connected with her state representative to create what would become Reegan’s Rule, which passed about a year after her daughter’s death. The bill encourages doctors to speak to parents about signs of Type 1 diabetes at specified intervals from birth through age 5.
“Reegan came here and changed the world in 16 months. Who does that?” Darice Oxendine notes. “God blessed us with her life. Still, it doesn’t make it any easier to lose her.”
Into the Future
Researchers are moving closer to a cure for Type 1 diabetes; one Boston, Massachusettes-based group, for example, is working on replacements for destroyed pancreatic cells. In the meantime, Reegan’s Rule has become the model for a push for similar—or, advocates hope, even stronger —bills in other states. Vanessa Evans has contacted the Oxendine family and hopes to lead an effort in Virginia in the near future.
In November, Pennsylvania became the second state to pass such legislation. House Resolution 569 again promotes education by doctors and was championed by parent Debbie Healy, who nearly lost her 17-year-old son, Michael, in the spring of 2014.
In the weeks before his diagnosis, Michael had been more thirsty and tired, reported some blurry vision and, as his parents later learned, had dropped 10 to 15 pounds. But the weight loss wasn’t obvious on the high school junior’s lanky, 6-foot-2-inch frame—or under his bulky winter clothes—and he also had a non-alarming raspy voice and some sinus pressure. “We thought, ‘Maybe a sinus infection or some little virus,’” Healy recalls. “He didn’t seem that sick.”
That changed on March 17, a day that Michael had missed school. “I came home from work and he just looked horrible,” Healy says. “He had a sunken-in look like he was severely dehydrated. He was gaunt. I thought, ‘Oh my God, what is wrong with him?’”
At the hospital, Michael’s blood sugars were about 14 times higher than normal, so elevated that he was near death and at risk of permanent brain damage if he survived. He was lucky: after four days of careful treatment with insulin and fluids, Michael left the hospital. He is now a freshman at Penn State University, majoring in kinesiology, controlling his diabetes with insulin and healthy eating and strong enough to do long bike rides to fundraise for diabetes research.
“I thought I was a bad mom because I hadn’t known how sick he was,” Healy says. “But I’m not. People just don’t know. I am so grateful that I got to keep my child. It was haunting me that other parents didn’t get that same chance. I couldn’t stand the thought of it.”
Neither could Pennsylvania State Rep. Ryan Mackenzie, who agreed to sponsor House Resolution 569. “I did not realize that its first symptoms were so closely related to many common illnesses,” Mackenzie says. “I also didn’t realize how quickly the disease could progress to coma or death if not identified. I could see how anyone could mistake the common symptoms for something less serious.”
Health-related resolutions often are distributed to doctors and nurses and submitted to medical publications and media outlets. “I will remain in continued conversations with medical professionals, patients and the families of those with Type 1 diabetes to increase awareness,” Mackenzie adds.
Advocates also would like to see blood sugar monitoring become a more routine part of health care, including at appointments for sick children. “If providers do not consider diabetes as a possible diagnosis when a child is ill, the diagnosis will be delayed,” Lipman says.
Other ideas: school nurses sending home information with kids who report flu-like symptoms and parents keeping home glucose monitors at home, just as they do thermometers. Speaking up at doctor visits also is important, Griffen says: “Trust your parental instinct, and push for them to be tested if you suspect something is very wrong.”
As Vanessa and Derrick Evans struggle through the first anniversary of Hailey’s death with their surviving daughters Kayla, 15, and Isabelle, 10, they are determined to honor her short life by speaking out.
“It’s been very difficult to focus on anything other than just surviving day to day, but we are very passionate about spreading awareness so no other family has to go through this,” Vanessa Evans says. “Not only here in Virginia but in every state across the nation. It’s a big motivator for us.”