Child, 5, to lobby U.S. lawmakers
07/06/2013 7:46 AM
07/06/2013 7:48 AM
After playing with toys at his day care center, 5-year-old Joel Blaco walks over to his mom, Melissa, and calmly says, “Mommy, I feel low.”
Melissa gives him a piece of candy, and Joel returns to the toys.
Joel has grown accustomed to living with Type 1 diabetes. He knows when his blood sugar drops and can alert his mom, and he can even sleep through the pin pricks that measure his blood sugar eight to 10 times a day.
On Monday, in Washington, D.C., Joel and 149 other child diabetics will share their stories with U.S. lawmakers while lobbying on behalf of the Juvenile Diabetes Research Foundation.
Joel was diagnosed with Type 1 diabetes when he was 22 months old. The symptoms at first were subtle.
“He would wake up in the middle of the night begging for water and then have a wet diaper almost immediately, and we’d change it multiple times in one night,” Melissa said. At the time, she was pregnant with her second child.
Fortunately, Joel’s father, Damon, had worked in Bayer’s diabetes division for eight years and knew the warning signs. The Blacos carried Joel to a doctor, who made the diagnosis. (Early diagnosis is crucial; had Joel gone undiagnosed, he could have suffered a seizure.)
Dr. Roland Tisch, who conducts diabetes research at UNC-Chapel Hill, said Type 1 diabetes is an autoimmune disease. “The body’s immune system recognizes cells that produce insulin as a foreign entity and destroys them,” he said. As a result, the body cannot produce its own insulin.
That’s why diabetics like Joel have to take daily insulin injections.
“Without that insulin, individuals with diabetes would eventually die because of it,” Tisch said.
In Type 2 diabetes, which is what 90 percent of diabetics have, the maintenance is not as intense because the patient is not insulin-dependent.
Tisch said research suggests that diabetes might be more aggressive in kids.
People with diabetes have higher risks of blindness, neuropathy, kidney failure and heart failure
Major life changes
After Joel’s diagnosis, the Blacos’ lives changed almost immediately.
“The day care we would take him to wouldn’t have him anymore once he was diagnosed,” Melissa said.
At the time, the Blacos were living in Connecticut and commuting to their jobs in New York City.
Melissa’s mother cared for Joel for three months full time while the Blacos searched for a day care that knew how to care for diabetic children, including administering insulin.
Two years ago, the family moved to North Carolina, where Damon found a job in Clayton, and Melissa began working from home.
“If he had an emergency, I couldn’t get to him because of the commute,” Melissa said.
They had to give Joel insulin shots, but because he was so young and small, he was sensitive to the amount, and his glucose level could fluctuate sharply.
Even today, the Blacos have to vigilantly monitor Joel’s calorie intake. “Every morning we weigh his bananas,” Melissa said.
In Clayton, Joel goes to Growing Years day care, where the director has experience administering insulin. Joel’s teacher checks his insulin level multiple times a day. He wears a continuous glucose sensor under his shorts and a glucose monitor on his bicep that is connected to a monitor his teacher can carry with her. It will beep if his glucose goes too low.
In the fall, Joel will start school at East Clayton Elementary, and Melissa admits she is worried that teachers there won’t be able to keep as close an eye on him.
Joel also wants to ride the bus. “We will have to check him before he gets on the bus, and if he is low, he won’t be able to get on,” Melissa said.
These days, Joel appears not to fret much about his disease.
“I think since he’s had it since he was young, it’s just a way of life for him,” his mother said.
But it wasn’t always so. At first, Joel got upset when his parents tried to give him his insulin shots.
“He would bargain with me and try to reason with me, and then we’d just have to hold him down and give them to him, because the alternative is him not having insulin, and that’s not an option for him,” Melissa said.
A network of support
Having a child with diabetes is a full-time job, and it’s expensive.
Melissa said the family spends about $200 a month on pump supplies, and the test strips they use 6 to 8 times a day are $1 each. Thankfully, the family’s health insurance helps out.
And through the Juvenile Diabetes Research Foundation, the Blacos have found a network of support. They have met other parents of child diabetics, and Joel is now a mentor to a 2-year-old with diabetes.
Melissa said they use the foundation’s Facebook group to post contact info for local babysitters who have experience in dealing with diabetes. They also use the site to let others know about pediatricians and day cares.
With the trip to Washington, Joel and Melissa hope that lawmakers will be able to put a face with the disease and see the importance of funding more research and the importance of getting new drugs to market more quickly.
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