On a cold, snowy fall day, friends, family and Colchester community members gathered at a barnyard farm stand on Mill Pond Road to celebrate the life of Greg Brigante-Sexton, who died three years ago from SUDEP, sudden unexpected death in epilepsy.
The cause of SUDEP is currently unknown, but the Epilepsy Foundation of America says most cases occur at night, and that complications with lung, heart and brain function may arise after a person has a seizure. The foundation also suggests a risk factor may include not taking medication regularly to control seizures.
The second fall-themed “pumpkin chucking” event since Brigante-Sexton’s passing is just one way his family honors his life and raises money for the Epilepsy Foundation of Vermont to assist in research. Participants purchased tickets to play games hosted by different community members, as well as try their hand at launching small pumpkins from a catapult donated by the Boy Scouts for the day.
Katie Sexton, Brigante-Sexton’s sister, wore a hand-crocheted hat with a purple butterfly stitched onto the front, the national symbol for SUDEP. Their mother, Linda Brigante-Sexton, makes the hats, scarves and other garments adorned with purple butterflies to raise money at craft fairs.
Sexton said the event is a great way for people who knew her brother to come together to honor his memory, as well as raise awareness for SUDEP.
“For us it’s helping keep a little piece of him going every year,” Sexton said. “We don’t want him to be forgotten, and we don’t want other families to go through this.”
Sexton said her brother loved sports: lacrosse, basketball, soccer. He was also a volunteer firefighter for the area station.
“He was a normal kid,” Linda Brigante-Sexton added.
She said her son was diagnosed with epilepsy at age 16, seemingly “out of the blue,” when he had two seizures in 10 days. Even after the diagnosis, she said the family had never heard of SUDEP.
“The doctors don’t tell you a lot because they say there’s nothing they can do for him,” Linda Brigante-Sexton explained. “But I think that as a parent of a child with epilepsy, you have the right to know this can happen.”
Audrey Butler, executive director of the Epilepsy Foundation of Vermont, said getting information on SUDEP to physicians and pharmacists around the state is one of the non-profit’s current goals.
“There’s a lot of new information that has come out on SUDEP, and we just won’t be happy until all the doctors make sure they include that in all their conversations,” Butler said.
Bret Dale, an Epilepsy Foundation of Vermont board member, attended the event with his wife, Amy, and daughters Quinn and Izzie. Dale got involved with the foundation after Quinn was diagnosed with epilepsy when she was just 2-and-a-half.
Dale said the foundation helped them connect with other families going through similar situations to provide support and services they needed. While Quinn has outgrown her childhood epilepsy and is seizure-free today, Dale continues to support the foundation and is excited about the new technologies being developed to help combat seizures and provide early warnings for SUDEP.
The foundation has donated 23 motion monitors using local grant money to families that could not normally afford the expensive equipment. Butler said the monitors are not covered by insurance. Dale explained the monitor goes under the bed and can detect and alert others if a person is having a seizure.
“If somebody has a seizure late at night, it can hopefully stop a fatal situation,” he said.
Dale added he and the foundation are researching other monitors like a seizure-detecting watch that alerts loved ones to a patient’s exact GPS location.
Butler added the best way to prevent SUDEP, however, is early diagnosis and taking medication ritually and regularly. She said the fewer seizures a person has, the better their chances are to avoid SUDEP.
The money the Brigante-Sexton family raised on Sunday all went to the Epilepsy Foundation of Vermont to assist in much-needed research of the disorder. While the pumpkin chucking event is not held annually, the family said it will host it every few years to keep Brigante-Sexton’s memory alive and to continue to fight for other families affected by the disorder.