In his final week of kindergarten, 6-year-old Ethan Morse had the last uncomplicated meal of his life.
His mother, LeAnne, had noticed that he had become thirsty and fatigued more often than usual. As a precaution, she took her son to a pediatrician. While the doctor distracted Ethan by having him draw a picture of his family, she broke the news to Morse’s parents that their son’s tests had come up positive for Type 1 diabetes.
“When we had picked him up from school that day, the kids had all had lunch,” LeAnne said, referring to the carbohydrate-rich spaghetti Ethan used to eat with impunity. “It’s always been his favorite meal in the world, but now we’ve been counting everything he puts in his mouth.”
On July 8, Ethan, now 15, and the families of two other teens with Type 1 diabetes from Simpsonville will travel to Washington, D.C., to tell their stories of life with their disease and lobby members of Congress for a renewal of the Special Diabetes Program. The program funds several research projects that promise to close in on a cure, but might get scrapped if not renewed past early next year, says Beth McCrary, advocacy chair of the Palmetto chapter of Juvenile Diabetes Research Foundation.
Federal funds from the Special Diabetes Program account for 35 percent of all T1D research every year.
“We’re learning so much from studies that have been in progress now,” McCrary said. “If the money stops, the programs stop and we lose momentum.”
Unlike the more common disease, Type 2 diabetes, Type 1 is usually referred to as an autoimmune disorder that affects as many as three million Americans, while 15,000 children are diagnosed with T1D each year. Type 1 diabetes is not typically caused by familial history, poor diet or excess body weight.
In order to keep his condition in check, Morse must balance the amount he eats to come to a healthy blood sugar level and check his levels with a needle in his left arm 10 times throughout the day and night. He’s been given blood sugar checks between innings when he plays baseball.
“He gets just sick of it,” Ethan’s mother said. “Sometimes he doesn’t want to talk about it and we have to remind that his long-term health depends on it. It’s a roller coaster you never get off.”
Morse will join over one hundred other delegates of the JDRF Children’s Congress, which represents all 50 states, to meet with top lawmakers in U.S. government. The Children’s Congress has lobbied in D.C. every other summer for the past 14 years. Ethan says he wants to stress to lawmakers that his complex condition is a difficult hindrance in an otherwise normal teenage life.
“I know my story would help,” he said. “We get to show these people what living with diabetes is. Without the funding they’ve given before and the funding they could give in the future, we couldn’t have gotten better insulin I need. We can tell them it’s gotten better and it can get even better.”
McCrary is the mother of daughter 12-year-old Hannah, who also suffers from T1D. The mother-daughter duo will travel to the nation’s capital in what is generally JDRF’s largest media event of the year. Past attendees for the Children’s Congress have included pop star Nick Jonas, NFL quarterback Jay Cutler and NBA all-star Ray Allen, who all either suffer from T1D or have a family member who does.
As a member of the Fort Mill High marching band, Ethan Morse’s normal requires him to take constant breaks during practice, which sometimes causes him to miss instruction. He can exercise for a long period of time, but the summer heat usually saps his energy until he can get his blood sugar to rise to a safer level.
“I have to play catch up sometimes,” he said. “I don’t want to be the weakest link in the chain of 175 people.”
There are no days off with diabetes, but with further research, the condition can be more livable, Morse says. A recent study published by the New England Journal of Medicine says a key component of what Minnesotan researchers call the “artificial pancreas” worked as intended and is being reviewed by the Food and Drug Association. The device would monitor blood sugar in diabetics and automatically disperse insulin when needed.
“They [members of Congress] only know what’s important to us if we let them know,” McCrary said. “We can only do that by coming out to these events, making phone calls, sending emails and letters.”
If they can do just that, Ethan Morse’s roller coaster might just level out to a more gentle ride by the time he goes to college. He wants to attend Clemson University and major in engineering or medical science. Morse’s mother, LeAnne, hopes that being in an environment with many other children his age suffering from T1D will show her son that others can relate to his daily struggles.
“It’s very rare for him to be in that environment where they understand his daily life,” she said, “and to have other people who can relate is priceless.”
For more information on the Juvenile Diabetes Research Foundation, visit JDRF.org to find your local chapter or call 800-533-CURE (2873).