Watching a new posthumously released movie is a complicated affair for the parents of the late actor Cameron Boyce.
or his mother, Libby Boyce, it’s a harrowing experience. She says not five minutes goes by when she doesn’t think about her 20-year-old son, who died of an epileptic seizure two years ago.
“If you just look at the freckles on his neck or a little movement he makes, it’s just raw,” she says.
For his father, Victor Boyce, the experience of seeing the movie Runt and seeing his son is less heartbreaking than not being able to speak to him or just hugging him afterwards. It’s the absence that feels so grim.
However, both agree that they need to use the film and their voices to raise awareness about epilepsy, which is still poorly understood by doctors, and what has been dubbed Sudden Unexpected Death in Epilepsy (SUDEP). Both parents said they didn’t know someone could die of epilepsy.
“Seeing him on film is kind of a mixed blessing. It was a film in which Cameron got his first starring role, which he was very proud of. And something he put his heart and soul into. And when you see the film, his heart and soul is at the heart of the film,” says his mother.
She says it’s “pretty hard” to see, to know his life was cut short at such an age.
“At the same time we want to be there, we are his voice, we are him,” she says. “And that’s why we have to show up. We are alive and we need to show up and be his voice.”
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Cameron Boyce was born in Los Angeles in 1998. In an interview with People magazine a few years ago to mark Black History Month, he revealed that his paternal grandmother, Jo Ann Boyce, was one of the so-called Clinton 12 children in Clinton, Tennessee, who became the first African American in the American South to incorporate one in 1956 attended high school.
“My nana stood up for what she believed in and did something amazing,” he said, then 15 years old. “Things will happen in your life and you will face adversity, but if you grow from it and learn from it, you will be a better person.”
Boyce landed his first major film role in the 2008 thrillers Eagle Eye and Mirrors. His first comedy role came in the 2010 Adam Sandler-produced film Grown Ups.
A year later, he landed his first starring role in Disney Channel’s Jessie, which tells the story of a young girl who moves to New York from Texas and the friends she makes. Boyce played Luke Ross for four years.
He went on to play the role of Carlos de Vil, Cruella de Vil’s teenage son, in the musical fantasy series Descendants, appearing in each of the three films in the franchise and supporting several spin-offs. Thus, he suffered the fatal attack before the third film was released.
Boyce’s parents say he wanted to take on more challenging roles from an early age. He did just that in the film Runt, directed by William Coakley and produced by Carl Rumbaugh and Gregory Thomas.
The film was first released at the 2020 Mammoth Film Festival in Mammoth Lakes, California, where it won an award. Its premiere took place in September 2021 at the TCL Chinese 6 Theater in Hollywood, which both of his parents attended.
His parents say that as a child, Boyce tried to use his fame to help various charities.
One that was particularly close to his heart was the California-based Thirst Project, which helps bring clean water to underdeveloped countries. He took walks to raise money for homeless organizations and worked with Make-A-Wish America, a charity dedicated to “creating life-changing wishes for children living with serious illnesses.”
“He was always aware he was a very, very intuitive, insightful person. He always cared about other people. It was obvious from the minute you could see his feelings,” says his mother. “He loved his family, he loved his friends and he just always wanted to help others.”
She adds, “If the Make-A-Wish kids would come. He would just spend the whole day with them. They were the king or queen of his world when he was with them. And he knew how much that meant. He understood that he meant a lot to people and that he didn’t take it for granted.”
When Boyce died on July 6, 2019, he was only 20 years old. His parents first issued a statement saying he “died in his sleep from a seizure secondary to an ongoing medical condition for which he was being treated.”
They added: “The world is undoubtedly without one of its brightest lights now, but his spirit will live on through the kindness and compassion of all who knew and loved him. We are heartbroken.”
A few days later, the family confirmed that the young man suffered from epilepsy.
“We are still trying to find our way through this extremely heartbreaking time and continue to ask for privacy so the family and everyone who knew and loved him can mourn his loss and make arrangements for his funeral – what in and of itself.” It’s excruciating,” they said.
Adam Sandler was one of many actors who played with him to pay tribute to him.
“I loved that kid. Took so much care of his family. Cared about the world so much,” he tweeted. “Thank you Cameron for everything you gave us. There was so much more on the way. All of our hearts are broken.”
Boyce’s parents said they spent a long time trying to understand what happened. They themselves knew little about the complexity or that seizures triggered by the neurological disorder can be fatal. She and her foundation are trying to correct that.
They say their biggest discovery of their journey was the lack of awareness of the condition.
“How little awareness there is and how little is talked about. It’s the number one neurological condition and we don’t talk about it,” says Boyce’s mother.
“People don’t feel free to discuss their diagnosis for some reason. There just isn’t enough awareness and there isn’t enough education for the people who are newly diagnosed.”
She adds: “One in twenty-six people has epilepsy. Everyone knows someone who has epilepsy, but we’ve never talked about it.”
Why do you think that?
“Because it’s stigmatized. It’s similar to gay people being closed off. It is similar to people with mental health problems, [and people] try to hide it because you’re being stigmatized and marginalized,” Boyce’s father said.
“One of the things we’re going to do is destigmatize it, bring it into the mainstream, pull it out from under the rug and shed a light on it.”
He adds: “Let’s talk about it because people with epilepsy need information. They need to know what to do when they have a seizure. We’re trying to arm people with information and put them in touch with the right healthcare providers and hospitals.”
The Foundation’s efforts are focused on providing people who have been diagnosed with epilepsy, and their friends and family, with practical information to answer the most basic question – “what now?”.
For example, if someone has just had a seizure, what now?
“After your seizure is over, make sure someone takes you to an emergency room to rule out serious medical problems. You should then speak to your doctor about seeing a specialist,” the website reads.
Another question is: “I just heard about SUDEP, now what?”.
The website states: “Sudden Unexpected Death in Epilepsy, or SUDEP, is a real, albeit rare, event for people with epilepsy. Be sure to talk to your specialists about how to reduce your risk.”
Boyce’s parents hope that by providing this most basic information, along with raising awareness of epilepsy, they can make a positive difference. If they can do that, they will have tried to help others, although the loss of their son is no less difficult to bear.
The couple say they believe deaths from epilepsy are underreported because coroners rarely cite it as the cause of death. And while the research goes on, it’s not huge. For example, after Boyce’s death, his parents learned that there are 40 different types of epilepsy.
“There’s a lot of research going on. But not nearly as much as, for example, for cancer or Parkinson’s and other diseases. So we want to increase the level of research a hundredfold and destigmatize it,” says Boyce’s father.
“While we’re hardly experts in epilepsy, we feel we have a voice and a platform, and we want to work with people who are experts and do research to help them get the resources they need, and the attention they need and deserve to receive even more funding so we can be effective.”
The couple say they have learned to grieve in different ways. Boyce’s mother says he speaks to other people who have lost loved ones to epilepsy and “we all support each other in our grief journey.”
His father says he mainly addresses his wife and their daughter. Maya.
“For me, the group support thing doesn’t really work. It only makes me sadder. It’s like the club you don’t want to be in.”
Both urge people to visit their website and arm themselves with life-saving information.
Boyce’s mother says: “We would like to invite the epilepsy community and beyond to get involved. Obviously the people who see us the most are Cameron’s fanbase, so we really want to go above and beyond and be a support to the epilepsy community.”
https://www.independent.ie/style/celebrity/celebrity-features/he-was-the-disney-channels-next-big-star-but-died-at-20-now-cameron-boyces-parents-want-you-to-know-why-41544989.html He was Disney Channel’s next big star but died when he was 20. Now Cameron Boyce’s parents want you to know why