Actor and humanitarian Cameron Boyce was passionate about being a positive force in the world. Last year he unexpectedly died at age 20. But his legacy – and the good deeds he inspires – live on.
His parents, Libby and Victor Boyce, started The Cameron Boyce Foundation (TCBF) to support the causes that Boyce was passionate about: ending gun violence, advocating for clean water, and spreading kindness. They’re also advocates for epilepsy awareness. Now they’re sharing their son’s story and encouraging others to continue Boyce’s mission for good.
SUDEP
Boyce, who was known for his roles as Carlos in Disney Channel’s “Descendants” and “Descendants 2” and Luke in “Jessie,” started having seizures when he was 16. He was treated by a neurologist and was taking seizure medicine for a year before his death.
The Emmy Award winner didn’t complain and didn’t let epilepsy interfere with his life. He still played basketball, danced, and hung out with friends.
His career was growing. Then in July 2019, Boyce died of sudden unexpected death in epilepsy (SUDEP). SUDEP is rare and occurs when a person with epilepsy, who was otherwise healthy, dies unexpectedly. Every year, 1 in 1,000 people with epilepsy dies from SUDEP.
His mother says if she could do it over again, she would make sure Boyce was treated by an epileptologist, a neurologist who specializes in epilepsy.
Awareness
His family was unaware of SUDEP before Boyce’s death. Now they’re raising awareness about the condition.
“We can’t wither away. He didn’t and he wouldn’t,” says Victor Boyce, explaining they’re motivated by their son’s strength and determination. “We can’t wither away and back down from what’s going on.”
They encourage other patients with epilepsy and their families to be diligent, proactive, and self-advocating.
TCBF has partnered with the Epilepsy Foundation on a campaign called K(NO)W SUDEP NOW! They want to raise awareness about epilepsy, provide tools and resources for individuals and families to reduce SUDEP, and raise money for research to help end SUDEP and epilepsy. They’ve also partnered with Citizens United for Research in Epilepsy (CURE).
“For us it’s really about research and ending it, curing SUDEP,” says Libby Boyce. “We never want anybody else to die of SUDEP and have a parent bereft like we are.”
Making the world a better place
From a young age, Boyce was a helper. He used his platform for good. Now those good deeds live on. One of his last projects, called “Wielding Peace,” is a social media campaign aimed at fighting gun violence. The campaign continues to show celebrities, survivors, and supporters wielding weapons of unity.
Their foundation is also continuing his work with Thirst Project, the world’s largest youth water organization, which is committed to providing access to safe, clean water for those in need.
His mother says they’re trying to do him justice and make him proud.
“He would most definitely want us to take care of each other and be loving to one another, and to be strong,” she says. “He would most definitely want us to continue working on things that make the world a better place.”