In the summer of 2010, Sam Burgwald was an active seven-year-old boy who loved to play outside with his sister,Emma, and his friends. Sam’s mom, Brandi, would watch the children run in and out of the house, consuming flavored boxes of water on those hot days. She remembers Sam always came back for more.
Seven-year-old Sam was so skinny, his parents could see every vertebrae in their son’s spine. As any growing boy should be, Sam was hungry all the time. He also woke up several times a night to go to the bathroom.
Concerned by Sam’s skinny appearance, Brandi and Eric, Sam’s dad, decided to schedule a doctor’s appointment just to make sure everything was okay. Eric mentioned that uncontrollable thirst, hunger and low-weight were some signs of diabetes.
The nurse assured the Burgwalds that Sam was probably just growing, but they had an opening that day, so the whole family went into Champaign to see their pediatrician with plans to go out to dinner afterward.
When bloodwork results came back to the doctor, Sam was diagnosed with Type I diabetes. His blood sugar level was 636. Normal blood sugar levels are between 80 and 120.
Type I diabetes is an autoimmune disease in which the body attacks and kills its own insulin-producing cells in the pancreas. Through no fault of their own, a person affected with Type I diabetes becomes insulin dependent for the rest of their lives.
Sam was immediately admitted into the hospital where he received 10 units of insulin. Sam felt relieved as he told his parents he was glad that “was the last shot he would ever have,” while they knew their son would have multiple shots on a daily basis to check his blood sugar level and to inject the insulin he needs.
“It’s the most overwhelming experience I could have because there is so much to learn,” Brandi said.
The Burgwalds learned how to do all the math associated with what Sam needs. They learned what to do if his blood sugar level is too low or too high, how to count every carb that goes into his body and how illness, emotions, hormones and adrenaline play into his levels.
“It feels like every single aspect of his life is counted,” Brandi said. “You feel like you’re sent home with enough medicine to kill your kid. It’s absolutely the scariest thing I’ve ever done. When you put your child to bed, you know there are things happening inside his body, but you can’t see it. You have no idea what will happen over the night.”
“For us, knowledge is power,” she continued. “But knowledge is also scary. In the beginning you’re just day-to-day. But the more I learn about it, the scarier it is to me.”
Over time, Type I diabetics can develop complications such as heart and blood vessel disease, skin and mouth conditions, osteoporosis, pregnancy complications, hearing problems or nerve, kidney, eye or foot damage.
Brandi said almost all diabetic parents get up to check on their kids during the night. In the beginning, they kept a constant watch on Sam. Now through understanding both the way his body reacts, and through education of Type I diabetes, the Burgwalds can sleep most nights.
Sam learned how to give himself shots within the first couple months of his diagnosis. Now at 11-years-old, Sam continues to be an active growing boy who plays sports, dances and raps to his parents’ delight.
Instead of daily shots, Sam wears an insulin pump, which injects the insulin into him throughout the day. The Burgwalds have to change the injection site once every three days, but the remote access to the insulin give Sam more freedom.
“The pump is just a choice,” Brandi said. “It’s not a better option. I want people to know when people have an insulin pump, it doesn’t mean they have a worse type of diabetes (than those who use a shot to get their insulin.)” It’s just a personal choice.”
Although the Burgwalds are constantly tied to their phones in case Sam calls, they appreciate the Mahomet-Seymour School District’s willingness to accommodate the needs of students with diabetes. There are approximately 12 students in the district and 17 or 18 children in Mahomet with Type I diabetes.
School secretaries monitor the children throughout the day to make sure their blood sugar levels are where they need to be. They have granola bars available when a student gets low, and are willing to call parents if they notice a change in a child’s mood or behavior.
As Sam gets older, Brandi and Eric have noticed that Sam is more conscience or embarrassed by his disease. Friends and teammates will often ask Sam about his pump or if he should eat certain foods at lunch.
“He’s aware of what he has to do, and that’s nice, but he’s also at the age where he doesn’t want to stand out,” Brandi said.
The Burgwalds believe educating the community on Type I diabetes will help people understand how Type I diabetes is different from the more common Type II diabetes. They also hope people will better understand what the children and their families go through on a daily basis. T
While persons with Type I diabetes cannot produce their own insulin, Type II diabetics produce their own insulin, but their body is insulin resistant. Nearly 90 to 95 percent of diabetic Americans are Type II diabetics.
“Every Type I diabetic wishes they were called something different,” Brandi said.
“Actually, Sam can eat anything he wants,” Eric said. “Of course you want to produce good eating habits, but we are just providing the insulin for him.”
People with Type I diabetes, often referred to as “juvenile diabetes,” have to fight against the misconception that only children can get the disease or that the child will grow out of the disease as they become an adult. Type I diabetics cannot change their diet or exercise plan to fight the disease. Type I diabetics will be dependent on insulin injections until there is a cure for Type I diabetes.
After Sam was diagnosed with Type I diabetes, Brandi joined forces with other Mahomet “D-Moms” to raise money for a cure while educating the community about this disease.
“When something happens to you, all you want to do is feel like you could do something about it because you feel helpless to any disease you’re fighting,” Brandi said.
As the “D-Moms” connected with support groups in other communities, they learned about the work Dr. Denise Faustman does with Type I diabetes at Mass General Hospital in Boston. Within a few months, they organized Miles of Hope to raise money for the research.
In its third year, Miles of Hope will once meet at the Elks Pavillion in Lake of the Woods on May 3 to raise money through the 1-mile or 5K walk/run, raffle items and entertainment.
“It’s so emotional to stand there and see everyone there to support our cause,” Brandi said.
As Brandi reads blogs by parents with Type I diabetic children, she notices that many of them feel isolated and alone because they are the only one in that community.
“It’s a pretty special situation here,” she said. “I’m not glad anyone has (Type I), but thank God I have that support. (As “D-Moms” we teach each other so much that we wouldn’t have known. And it’s so nice just to have someone to share emotions with. Otherwise you feel alone because it’s not a disease people know much about.”
The Burgwalds are also appreciative of community members who watch out for Sam’s well-being.
“Whenever I see someone, they ask how Sam’s doing,” Brandi said. “People are watching out for him, and that’s amazing to me.”
