The parents of late Disney star Cameron Boyce have explained why they want people to know how he died.
The 20-year-old actor, known for his roles in the Disney Channel franchise descent and tv show jessydied after being found unconscious at his North Hollywood home on July 6, 2019.
His family said at the time that he had suffered a seizure following a “persistent medical condition”, before confirming days later that he had epilepsy.
Parents Libby and Victor were unaware that the disease could cause life-threatening seizures, known as Sudden Unexpected Death in Epilepsy (SUDEP).
Now they’ve made it their mission to raise awareness about epilepsy, starting the Cameron Boyce Foundation with the aim of getting people talking about the disease and raising money for research.
Libby told The Independent: “It’s the number one neurological disease and we don’t talk about it.
“People, for whatever reason, don’t feel free to discuss their diagnosis. There just isn’t enough awareness and there isn’t enough education for people who are newly diagnosed.
“One in 26 people have epilepsy. Everyone knows someone who has epilepsy, but we’ve never talked about it.”
Cameron’s parents clearly know why – and they want to do something about it.
Victor said: “It’s stigmatized. It’s like gay people are locked up. It’s like people with mental health issues, [and people] try to hide it because you are stigmatized and marginalized.
“One of the things we’re going to do is de-stigmatize it, bring it into the mainstream, get it out from under the rug and shine a light on it.
“Let’s talk about it, because people with epilepsy need information. They need to know what to do in the event of a seizure.
“We’re trying to arm people with information and connect them with the right kind of health care providers and the right kind of hospitals.”
Libby added: “We want to invite the epilepsy community and beyond to get involved.
“Obviously the people watching us the most are Cameron fans, so we really want to move beyond that and be a support for the epilepsy community.”
You can visit the foundation’s website and learn more here.