Cameron Boyce's Parents Reflect on His 'Tremendous Loss' 4 Years Ago and Why He Would Be 'Proud' of Them Now

"He'd be blown away," Cameron's mother, Libby Boyce, said of the work she and her husband Victor Boyce have done in honor of the actor, who died after a seizure in his sleep in 2019

Cameron Boyce’s parents, Victor and Libby Boyce, are still grieving the sudden loss of their son, but they’re able to find peace in knowing that the work they do would make him proud.

Cameron died in his sleep in 2019 at age 20 after having a seizure. His parents told Taylor Lautner and his wife, also named Taylor, on Wednesday’s episode of The Squeeze podcast that they weren’t even aware there was a risk of him dying like he did — and that is what has inspired their work.

“There’s so much stuff that we didn’t know before he died,” Libby said.

The condition Cameron died from, SUDEP — sudden unexpected death in epilepsy patients — was something Victor said they “had never heard of.”

Though the Descendants actor had suffered from a few seizures in his life — only 5, they shared — each one had happened in his sleep, and his parents thought that was a good thing.

“Everything that Cameron had in terms of his epilepsy were actually things that we thought were positive, which were actually negative,” Libby told the Lautners. “I thought because he had them in his sleep that he was safe. But actually having them in your sleep is more common[ly] associated with people dying.”

Related: How Does Someone — Like Cameron Boyce — Die from Epilepsy? A Neurosurgeon Explains

Recalling the first seizure her son experienced, Libby said it happened in 2017 during a sleepover when several of his friends were over.

“They came running into our room at 6 a.m. saying that Cameron was spitting up blood — when in actuality he was just biting his mouth. He was completely out of it when we went in, just really didn't know who he was, where he was, nothing. He was just kind of vacant.”

It wasn’t until he had a second seizure — more than 13 months later — that he was officially diagnosed with epilepsy.

“That’s when it got super duper serious,” Victor said. “You’re diagnosed as epileptic. Now we need a plan. We need to find meds, we need to find information, treatment. And this is our whole frustration with the medical system — at this point, we’re still not getting a whole lot of information, tools... nothing substantial, nothing significant as far as how intrusive and invasive epilepsy is on your life."

Related: ‘Descendants’ Stars Dove Cameron, Booboo Stewart and Sofia Carson Reunite for Late Costar Cameron Boyce’s Benefit

Despite epilepsy being the “most common neurological disease,” Libby and Victor said doctors also “don’t know much about” it, and that, combined with the lack of information they had prior to Cameron’s sudden death four years ago, inspired the couple to start the Cameron Boyce Foundation.

“Our big message is about taking that diagnosis very seriously. And the medical community doesn’t tell you it’s serious, but you need to know it is,” Libby said. “You have to give people more tools, and that we just didn’t get.”

She continued, “There’s a balance between freaking a parent out and just giving them tools, and we didn’t get those tools. The Cameron Boyce Foundation — that’s really what we’re all about is awareness.”

"Even as hard as it is, and just every day, [I’m] like, ‘Why did this kid die?’ — I know that people are safe because of him," she added. "And no, it doesn’t make it better. It doesn’t heal me. But it does make me feel as though at least something good came of it.”

Related: Dove Cameron, Sofia Carson and More Share How Late Friend Cameron Boyce 'Inspired' Them: 'Like Sunshine'

They also reflected on how Cameron would’ve responded to the work they’re doing. Victor believes his son “would be so proud of what we’ve done” while Libby was in full agreement.

“He’d be blown away,” she said, adding that Cameron would also be “proud of his best friends."

Victor noted that his pals have been “super involved, super dedicated” in the work the organization is doing. “Literally ride or die," he said.

Libby then gave a special shoutout to his Descendants co-star Sofia Carson and his Jesse co-star Karan Brar, in particular, for their involvement in the Cameron Boyce Foundation. Victor called their work “unbelievable” as he shared that they’ve “been blessed with a strong village."

In keeping Cameron's legacy alive, the Boyces have also organized the foundation's Cam for a Cause Gala, which kicked off in 2022. Many of Cameron's costars and friends were in attendance for the first gala, including Sofia, Karan and Dove Cameron.

Speaking to PEOPLE at the event, Dove, 27, opened up about Boyce's lasting impact on her life.

"I think that Cam was the most alive person I've ever known," she told PEOPLE exclusively. "I think that in that, he has inspired me to be more alive, he has inspired me to be more human, more deeply feeling. And I think that's one of his legacies, he touched people in that way. In a way that I don't know anybody else has."

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Sofia, who performed at the event, also praised her late costar.

"Cam always said that we all go, but what we leave behind should be bigger than us. That's exactly what he did," she told PEOPLE. "Feeling Cam's presence and loving him and being loved by him was like feeling sunshine."

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