- REUTERS/Kevork Djansezian
- Actor Cameron Boyce, best known for his role as Luke in Disney Channel’s “Jessie,” died suddenly on July 6 at 20 years old.
- His parents recently spoke publicly for the first time on Good Morning America in an effort to raise awareness for the condition that killed him, epilepsy.
- Cases of epilepsy, a chronic brain disease marked by recurrent, unprovoked seizures, can range from mild to severe.
- Epilepsy can be well-managed, but it comes with the risk of sudden unexpected death in epilepsy, or SUDEP, which may be due to seizures causing breathing or heart issues.
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When Disney Channel star Cameron Boyce died suddenly in his sleep July 6, fans and fellow actors reacted with shock, grief, tributes, and questions about how the tragedy occurred.
Boyce’s parents have just spoken publicly for the first time on “Good Morning America” about the condition that killed him, epilepsy, in an effort to honor their son and raise awareness about the the chronic brain disorder that causes seizures and other health problems.
“The night he passed away we were out to dinner with him just hours before,” his dad, Victor Boyce said, adding that he and his son were texting until about 12:30 a.m. afterward. “And sometime between the last text he sent me and the morning, he was gone. It’s not cliche to say, ‘You never know.'”
Epilepsy is a chronic brain disorder that causes seizures and other health problems. While many people with the condition live long, productive lives, it does come with a small risk of death, either from seizure complications (like a car accident) or a poorly understood phenomenon called sudden unexpected death in epilepsy (SUDEP), which Boyce died from.
“Every provider has had a tragedy like this happen in one of their patients,” including those with very well-controlled epilepsy, Dr. Kathryn Davis, medical director of the Epilepsy Monitoring Unit and Penn Epilepsy Surgical Program, told INSIDER. “It’s devastating for caregivers and loved ones.”
Epilepsy is one of the most common brain conditions
The term epilepsy doesn’t describe a single illness, but rather any “recurrent, unprovoked” seizures that aren’t caused by something explainable, like alcohol withdrawal or very low blood sugar, according to the Epilepsy Foundation.
Epilepsy is one of the most common brain conditions, with about 3.4 million people in the U.S. having the “active” form of the condition. Millions more have a history of the disease, according to the Centers for Disease Control and Prevention.
Seizure disorders can be caused by other brain-related medical issues like strokes, brain infections, and traumatic brain injury. But more often than not, the condition can’t be traced to any one cause.
Epilepsy’s severity can vary depending on the patient. About two-thirds of people can manage their disease, meaning nearly or entirely eliminating seizures, with medication alone, said Davis, who’s also a spokesperson for the American Neurological Association.
But for others, especially those who develop it at a young age, it can be “devastating” and come with “significant cognitive impairments,” Davis said.
“A lot of people think of epilepsy as a uniform disease, but there are many types of epilepsy,” she said.
Though unusual, epilepsy can be fatal
Even for people with well-managed epilepsy, it’s important to be aware that seizures can lead to fatal complications,, like injuries and drowning. The disease also comes with the risk of SUDEP, which is estimated to kill just over 1 in 1,000 people with epilepsy each year, according to the CDC.
Davis said SUDEP is comparable to sudden infant death syndrome in babies in that it’s unpredictable, poorly understood, and most often happens at night or during sleep. It may be caused by the seizure’s effects on heart rhythm, ability to breathe properly, or both.
People with uncontrolled or particularly violent seizures, as well as those who were diagnosed at a young age, are at higher risk for SUDEP.
The best way to prevent SUDEP is to prevent seizures by working with a professional to find the most effective treatment protocol, adhering to it, getting good sleep, and avoiding triggers like alcohol.
Advocacy-fueled research could eventually lead to better seizure detection and prediction devices, ultimately helping to prevent seizure-related deaths, according to the Danny Did Foundation, which was founded by the parents of a boy who died from SUDEP.
Now, Boyce’s parents are bringing more awareness and resources to epilepsy advocacy. The couple started the Cameron Boyce Foundation in August, which advocates for epilepsy awareness as well as other causes the actor was passionate about, like ending gun violence.
This morning, his parents also announced they’re partnering with the Epilepsy Foundation SUDEP Institute, which educates physicians about the condition, raises money for research, and supports families affected by epilepsy.
“We don’t want anybody to lose their child to anything,” Victor Boyce told Good Morning America. “‘Cause this feeling is just the worst. And, you know, no parent should have to go through this.”