Seth Sugar’s entire 11-year-old life, as well as that of his Deerfield family, drastically changed when he was stricken with type 1 diabetes just months ago.
The sixth-grader at Shepard Middle School has to test his blood sugar as many as 15 to 25 times a day to make sure it’s at a healthy level.
“It hurts, but I just push through the pain,” Seth said. “If I don’t feel good, I have to sit out of sports. And any time I go anywhere with my friends, I have to carry a backpack with supplies, and say ‘Wait guys! I have to test my blood sugar.’
“My friends are all very understanding, but I find it really annoying,” he added.
And Seth especially wants everyone to know they can’t catch diabetes from people who have it, so they shouldn’t be afraid of them.
His problem was diagnosed after his mother, Jodi, took him to a doctor for a “well child” checkup. However, because he seemed to be thirsty a lot and was urinating frequently, she asked for a blood test.
And that is when the family found out what Seth was facing.
“It has been a nightmare since his diagnosis. This is a terrible disease,” Seth’s father, Bryan, an intellectual property attorney, said. “The distinction between what type 1 diabetics and type 2 diabetics suffer is not really understood, but in many ways type 1 is a different animal than type 2. Both are situations where there is a loss of insulin producing islet cells. One is gradual and one is very quick. Type 1 is a very quick reduction of islet cells. It is an autoimmune reaction.
Seth’s blood sugar was “ridiculously high,” his mother, Jodi, said. He had to go into the hospital for an extended stay, not so much because of how sick he was, but because the staff had to teach his parents how to care for him.
If diabetics don’t eat, their blood sugar could become too low and if they don’t test, they could die, so now Jodi spends much of her time making sure Seth is testing, as well as caring for her daughters, Sari, 9, a fourth-grader, and Jamie, 6, a first-grader, both at Kipling Elementary School.
“Then, parents also have to fight with insurance companies to cover enough test strips, because the strips cost $1 each,” Jodi added. “We belong to a support group where parents have reported that their insurance companies cover only eight test strips a day, though many times more are required. Their children could truly die.”
Seth has recently begun using a Dexcom constant glucose monitor, which has brought his testing down to seven or eight times a day, but that is still way too many punctures for him.
The night Seth was diagnosed with the disease, his father promised him he would do everything in his power to find a cure. And he immediately began researching programs around the world. He also consulted physicians in Europe and Israel, as well as in this country.
“After months of research, I determined the only clinically proven, practical cure available today for type 1 diabetics was an islet cell transplant, in which isolated insulin producing cells from a donor pancreas are transplanted into a diabetic,” Bryan said.
“As it turns out, the program with the highest success rate using this procedure is an international collaboration of physicians based out of the University of Illinois — the Chicago Diabetes Project — right in my own back yard.”
Bryan noted that the procedure was not perfect, because patients must take immunosuppression drugs, and it is currently available only to those 18 years and older who are not aware of their sugar levels dropping to dangerous levels.
However, the Chicago Diabetes project is working on technologies that would eliminate the need for immunosuppression drugs and make it available to children, Bryan said.
“I believe a cure for Seth is within reach and can be achieved in his lifetime,” Bryan said. “What these doctors do is absolutely magnificent. I’ve met with at least 30 and their program is what I’ve chosen to support. It has turned out that there is a gentleman about my age who was an islet cell recipient. He is cured. He no longer has to give himself insulin.”
Seth noted that amputations result in those who suffer from the disease’s long-term complications, something he hopes he doesn’t have to experience.
“This is a very, very serious disease and we need to help get a cure,” he added.
The Cutting Edge Foundation, which supports the Chicago Diabetes Project, held a fundraiser Oct. 19 in Seth’s honor at Trump Towers that raised $300,000 to continue research.
Donations may be made online at www.chicagodiabetesproject.org under “Help Us Find a Cure.”