For as long as he can remember, Chandler Edwards has often awoken at night and has had trouble getting back to sleep. He needs to have his blood-glucose levels monitored constantly, whether it’s during the middle of the night or before he plays basketball.
Sometimes Edwards can’t even spend his lunch period at school with friends, instead eating with the school nurse in her office.
Edwards, who will be entering sixth grade at Greenburgh’s Richard J. Bailey Elementary School in September, was three years old when he was diagnosed with Type 1 Diabetes, an autoimmune disease that can strike people of any age because the pancreas stops producing insulin.
“It’s very important for (researchers) to find a cure,” Edwards said. “I don’t want to live like this for the rest of my life and I don’t want to see kids go through this for the rest of their lives.”
He will be doing his part this week as one of two Westchester students and one of 10 from New York State who are in Washington, D.C. for the Juvenile Diabetes Research Foundation (JDRF) Children’s Congress. The purpose of the Children’s Congress is to convince lawmakers to once again fund the Special Diabetes Program in the federal government’s Fiscal Year 2020 budget to continue critical research in the hopes of preventing, treating and eventually finding a cure for juvenile diabetes.
Related issues, such as finding a way to make prohibitively-expensive insulin more affordable, will also be discussed when the Children’s Congress delegates meet with members of Congress. Two years ago, Congress appropriated $150 million for the program.
Edwards and Sophie Rinzler, the second Westchester delegate, who will be a seventh-grader this fall at Chappaqua’s Robert E. Bell Middle School, will be joined by peers from all 50 states and abroad for the event.
Rinzler, who was four-and-a-half when she was diagnosed, said she decided to apply to be part of the Children’s Congress last winter through the JDRF website, detailing what her life has been like with the disease during the application process.
She has made scrapbooks for her congresswoman, Rep. Nita Lowey, and New York’s senators Chuck Schumer and Kirsten Gillibrand, also describing the importance of continued funding.
“Type 1 is always there,” Rinzler said. “When I go to school it’s there. When I go on vacation it’s there. When I play soccer and I’m on the soccer field it’s there. When I’m sleeping it’s there. Wherever I go it’s always following me.”
That also includes when Rinzler, 12, is out with friends and they’d like to get a snack or eat pizza, she said. It requires constant vigilance, including keeping track of carbohydrate intake and blood-glucose levels.
While life for people with Type 1 Diabetes is challenging, it also has a profound effect on their families. Amy Rinzler, Sophie’s mother, said she and her husband continue to wake up in the middle of the night to check on their daughter. Unlike some people who awaken when their blood-sugar levels are askew, that’s not the case with Sophie.
With a son that is two years younger, it complicates situations that most families take for granted.
“For our family, it changes the meals that we eat, it changes how we plan our vacation,” Amy Rinzler said. “My husband and I get up in the middle of the night, every night, still, at midnight and at 3 a.m. to look at her sugar and blood-glucose levels to see what’s happening.”
Sometimes the readings dictate waking Sophie up for sip of juice or readjusting the settings on her insulin pump, Amy Rinzler said. Other times it may require a shot of insulin, she said.
Both Chandler’s and Sophie’s diagnoses came as a surprise to their families. Since Type 1 Diabetes is neither hereditary nor determined by diet.
Laverne Edwards, Chandler’s mother, said she first noticed her son’s constant thirst and frequent urination. He consumed water at an alarming rate, typically a gallon a day as a three-year-old, she said.
“It’s an awful disease and I wish that no other child has to go through this because your entire life will change,” Laverne Edwards said. “It’s not the same as not having it. Everything changes.”
Sophie Rinzler said she’s excited to be part of the Children’s Congress, calling it a “once-in-a-lifetime opportunity.”
“It’s going to be exciting,” she said.
Chandler, who submitted his application just before the February deadline, said he’s happy he’s attending and looks forward to meeting other students from around the country.
“I wanted to do something to make a change for people,” he said.