Sixth-grader Norah Byrne is fighting for a better quality of life. For nearly two years, the South Side Middle School student has been living with two autoimmune diseases, Type 1 diabetes and Celiac disease, both of which create daily challenges. Despite the difficulties, Norah is doing what she can to raise awareness and money for research in hopes of finding a cure. Last month, Norah participated in the annual JDRF One Walk in East Meadow, raising more than $18,000 for JDRF, an organization that works to find treatments for Type 1 diabetes.
“We had a really good turnout, especially since the weather was dreadful,” Ryan Byrne, Norah’s father, said. “The intention is to get the people who care about her, help her realize that she’s not alone.”
On Oct. 27, about 40 of Norah’s friends and family members braved monsoon-like conditions to participate in the walk. Participants included Norah’s soccer coaches and teammates, as well as her grandparents and three siblings, Owen, 14; Sean, 13; and Emma, 8. While the Byrnes are thrilled with the amount of money they helped raise, taking part in the walk was also a way to help Norah cope with this condition that has dictated a new way of life.
Norah was diagnosed with Type 1 diabetes on Valentine’s Day 2018, while a fourth-grader at Wilson Elementary School. A few months later, she was diagnosed with Celiac disease. Both of these diseases mean that she has to be careful about what she eats, her glucose levels need to be constantly monitored and she also requires an insulin pump. Sleep, classes and sports practices are all disrupted if her blood sugar gets too high or too low because she may need to eat something or adjust the pump. For the Byrnes, Ryan said, the greatest challenge is explaining her daughter’s disease to others.
“The vast majority of people have no understanding of what it means to have Type 1 diabetes,” Ryan said.
He said most people assume she has Type 2 diabetes, which has been on the rise, is frequently diagnosed in childhood or later and its onset is due to a poor diet or lack of exercise. Type 1, however, is genetic, cannot be prevented and has no cure. With this disease, the body’s defense system attacks the cells that produce insulin, a hormone essential for turning food into energy, and as a result, the body stops producing insulin. Those with Type 1 require insulin injections and it must be carefully managed, all day long.
The family is learning and doing what they can to support Norah and to try to make a difference. Her mother, Maureen, a physician assistant at NYU Winthrop, has found an informal support group of other moms who also have children with Type 1 diabetes, which has helped her deal with the daily challenges .
Norah is the third of four children, and according to her father, the most active one: her sports activities include basketball, soccer, softball, dance and swimming. He said that seems to be a good thing because her blood sugar numbers are most stable when she’s on the move. They try to anticipate before a game so it doesn’t become an issue, but he said Norah sometimes gets anxious because she’s unsure if her coaches and trainers will understand if she has to step out for a minute to grab a snack.
“That’s heartbreaking for us,” Ryan said, “It’s not something an 11-year-old should have to deal with.”
Birthday parties are also a challenge, and if the team wants to go out for ice cream, she has to double check.
“The spontaneity is gone,” Ryan said. “Nothing is ever simple.”
Still, the family is remaining positive and is hopeful that they will see a cure in Norah’s lifetime. Ryan works in sales at Bloomberg and his company match put the team in the top four for the event. The money goes to JDRF, an organization founded more than 45 years ago to fund diabetes research. To date, the organization has committed $2 billion to research.
“We are currently funding over 70 active clinical trials in 21 countries across the globe,” Jamie Jones, development manager at JDRF, told the Herald. “Advancements continue to be made with Beta Cell Replacement, an experimental therapy that involves implanting protected insulin-producing cells inside the body, and the artificial pancreas, a technology that constantly monitors blood glucose and administers insulin as needed.”
Jones reiterated the challenges faced by those with Type 1 diabetes on a daily basis, which makes the desire for a cure all the more urgent. “It is not a simple pill once a day,” Jones said, “it’s constant vigilance, all day, every day.”