SPRINGFIELD — South Hadley adolescent Braden Kouflie never lets Type 1 diabetes limit his accomplishments — or appetite — despite every challenge the disease throws his way.
The 12-year-old still sneaks extra pieces of Halloween candy, though his continuous glucose monitoring system will snitch on him if he miscalculates the additional insulin dose.
This same device popped off this summer while he attended a Nike Boys Lacrosse Camp at The Williston Northampton School, and another pre-teen boy sweated bullets while snapping it back into place. Braden keeps active between lacrosse, soccer, golf and snowboarding. However, all it takes is one low blood sugar alert to bench him from a game.
“It’s a constant battle,” Braden said. “There’s no cure, not yet.”
On Oct. 4, Braden spoke about such challenges to 460 people attending the second annual Party With 1 Purpose. The gala held at the Basketball Hall of Fame in Springfield raised more than $470,000 for diabetes research organization Breakthrough T1D. By raising awareness for Type 1 diabetes, Braden and his mother Elizabeth Gosselin Kouflie step closer to their dream of a cure.
“I think it’s a really unique fundraiser. There’s a lot of people there that have no clue what it’s like to live with Type 1 or to manage Type 1,” Elizabeth said on a Zoom call with the Gazette. “It’s a huge education night.”
Learning to live with chronic illness
Elizabeth also spoke at the gala about her experiences as a Type 1 mom. She recounted the “brutal” early days when Braden was first diagnosed, five years ago. As the nurses gave a crash course on diabetes management, she said she sat in disbelief, desperately wanting to return to previous normalcy. Every finger prick and insulin shot was met with resistance, she told the audience.
Those first few years were scary for Braden, too. He told the Gazette that he was embarrassed when his classmates watched him leave class multiple times a day to visit a nurse, or when he had to sit out of the rest of a game without warning. At the time, none of them knew his blood sugar had dropped.
“Now, it just feels normal,” Braden said. “I have a lot of friends that know what is happening.”
The family eventually settled into their routine. Braden manages his own daily insulin shots and finger pricks without protest. His mother or his father, Shane, pack a bag of snacks and medical supplies for every outing. His parents also wake him up five out of seven nights a week for a midnight snack to increase his blood sugar.
Even so, new challenges present themselves. In September, Braden transferred to a prep school with a whole new dining hall menu. He also switched continuous glucose monitoring systems. Then there’s the most dreaded challenge for any teenager: puberty.
“Change is constant in this disease,” Elizabeth said. “It’s never going to be what used to work continues to work six months later, ever.”
A path to a cure
Rarely does the Kouflie family face these obstacles alone. Elizabeth said Braden’s friends have learned about the disease alongside her son. The kids sit with Braden during snack breaks and carry his medical bag. Braden’s friends’ moms download phone applications to monitor Braden’s blood sugar during overnight stays. That whole support group was there during the gala, watching Braden’s big moment.
“I didn’t feel like it was like nerve-racking,” Braden said. “I feel like if I looked at them during the speech, I definitely would have started laughing and messed up the speech.”
Party for 1 Purpose organizers David Jr. and Sarah Fontaine asked Elizabeth’s company, Commonwealth Packaging, to sponsor the event. The sponsorship came with a speaking slot, but Elizabeth said she thought Braden sharing his experience would be more impactful. Braden sent in a video speech last year Party for 1 Purpose, but this was his first time speaking live.
“There’s a lot of people in his school and close family friends that helped Braden practice his speech,” Elizabeth said. “Our close friend is the director at Berkshire Hills Academy of Music. He would go there once a week to practice in their auditorium and sometimes read to the students there to get experience speaking in front of people. So by the time it was showtime, he was he seemed totally confident.”
Beyond the gala, the Kouflies give back to the Type 1 Diabetes community in every way they can. In the past eight weeks, Elizabeth connected with three different people in her network who newly became a Type 1 mom to help them learn the ropes. Braden, too, shows kids his pump or his continuous glucose monitoring system and talks to them about the challenges he’s faced.
“It’s a club you never want to be invited to, but once you’re in, it’s a fraternity for life,” Elizabeth said.
