"We've been very surprised and pleased at the reach we've been able to have in speaking about epilepsy," Victor and Libby Boyce say
In the five months since Cameron Boyce died at age 20 after suffering a seizure in his sleep due to epilepsy, his parents, Victor and Libby, have made it their mission to raise awareness of the neurological disorder.
In an exclusive interview with PEOPLE, Victor and Libby share what they believe the late Disney Channel star would think about the many projects they’ve kickstarted in his memory, including the moving PSA for K(NO)W SUDEP NOW, a partnership between The Cameron Boyce Foundation and the Epilepsy Foundation to help end Sudden Unexpected Death in Epilepsy.
“I think he would be beyond proud,” Libby says. “I think he would just be blown awa,y because he was always sort of the one in front of the camera. And I know there are a few times, for example, that he would pull me in, in front of the camera for anything, and I couldn’t speak at all.”
“But he’s kind of coming through me, right now, in a way that I think is incredible,” she adds. “When I’m talking to folks about this on camera, I’m not nervous, it’s just coming out. We just have an incredible amount of responsibility to move the needle on the epilepsy front and bring it out from the shadows.”
Echoing his wife’s statements, Victor says that Cameron would be “disappointed” had they not gotten involved with epilepsy activism after his death.
“Cameron always looked up to his mom, as far as her business acumen, and how she impacts her staff and how she gets stuff done at work,” he says. “He always used to call his mom a bad a—. And so, if he knew that we didn’t do something, he’d be like, ‘What? What do you mean you did do something? You have to do something.’ ”
Victor and Libby also spoke about the success they’ve had with the Cameron Boyce Foundation, which supports causes important to the late actor, such as ending gun violence and advocating for clean water.
“We started it, pretty much immediately after our son’s passing and we didn’t really know what to expect,” Victor recalls. “And we’ve come a very long way in a very short period of time. We’ve partnered with some other foundations, we’ve raised what I think is a pretty good amount of money and we’ve already contributed to a couple of things. We have a lot of support and a great team.”
Adds Libby: “We’ve been very surprised and pleased at the reach we’ve been able to have in speaking about epilepsy. We really had no idea that we could impact lives with our voices. Cameron did that. We didn’t do that. Nope. And so, we kind of jumped in feet first and we, just speaking about him and his impact on this world and what we’ve learned about epilepsy since he passed, I think has made a difference in many people’s lives in this world.”
Heading into the new year, Victor and Libby are determined to continue their activism and educate people about epilepsy.
“We really feel strongly that we need to have this conversation because epilepsy is the most common disease that we know the least about,” Libby says. “So we want to bring in donations, obviously for research and also to do as many interviews and have as many conversations as we can, so that we can make epilepsy have the attention that it’s so needs and deserves.”