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

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

Cameron died in his sleep in 2019 at the age of 20 after suffering a seizure. His parents told Taylor Lautner and his wife, also named Taylor, on Wednesday’s episode of the show Grip podcast that they didn’t even realize was in danger of dying like he did — and that’s what inspired their work.

“There are so many things we didn’t know before he died,” Libby said.

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

Although Descendants the actor suffered from a few seizures in his life – only 5, they shared – each one happened in his sleep, and his parents thought it was a good thing.

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

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

“They came running into our room at 6am saying Cameron was vomiting blood – when in fact he was just biting his mouth. He was completely out of his mind when we walked in, he just didn’t know who he was, where he was, nothing. It was just empty.”

It was only after he had a second seizure – more than 13 months later – that he was officially diagnosed with epilepsy.

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

Cameron Boyce at Variety’s 2018 Power of Young Hollywood Event.

Paul Archuleta/FilmMagic

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

“Our big message is that we should take this diagnosis very seriously. And the medical community doesn’t tell you it’s serious, but you have to know it is,” Libby said. “You have to give people more tools, and we just haven’t gotten that.”

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

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

Libby Boyce, actor Cameron Boyce and Victor Boyce attend the United Way Celebration of the 11th Annual HomeWalk to End Homelessness in LA County at Grand Park in Los Angeles on November 18, 2017.

Greg Doherty/Getty

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They also thought about how Cameron would react to the work they were doing. Victor believes his son “would be so proud of what we did,” while Libby completely agreed.

“He would be delighted,” she said, adding that Cameron would also be “proud of his best friends”.

Victor noted that his friends were “super involved, super committed” to the work the organization was doing. “It’s literally ride or die,” he said.

Libby then called out his in particular Descendants colleague Sofia Carson and his Jesse colleague Karan Brar, especially for their involvement with the Cameron Boyce Foundation. Victor called their work “amazing” while saying they were “blessed with a strong village”.

From left: Sofia Carson, Cameron Boyce, Dove Cameron and Boo Boo Stewart in ‘The Descendants’. Jack Rowand/Disney Channel

To keep Cameron’s legacy alive, the Boyces also organized Cameron’s foundation gala starting in 2022. Many of Cameron’s friends and friends were in attendance at 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 Cam was the most vibrant person I’ve ever known,” she told PEOPLE exclusively. “I think in that he inspired me to be more alive, he inspired me to be more human, I feel more deeply. And I think that’s one of his legacies, he touched people in that way. In a way that I don’t know that anyone 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. He did just that,” she told PEOPLE. “Feeling Cam’s presence and loving him and being loved by him was like feeling the sun.”

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Source: HIS Education