For the parents of the late actor Cameron Boyce, watching a new posthumously released movie is complicated business.
For his mother, Libby Boyce, it is a thrilling experience. She says five minutes go by without thinking about her 20-year-old son, who died two years ago from an epileptic seizure.
“Just looking at the freckle on his neck, or a little movement he makes, it’s just gross,” she said.
For his father, Victor Boyce, the experience of watching the film, Runt, and seeing your son is less heartbreaking than not being able to talk to him afterwards, or just hug him. It is the absence that seems so gloomy.
Yet both strongly agree that they must use the film and the voices they have to raise awareness about epilepsy, which is still little understood by doctors, and what is called sudden death. unexpected in epilepsy (SUDEP). Both parents said they didn’t know someone could die from epilepsy.
âWatching him in the movie is kind of a mixed blessing. It was a movie that Cameron was in his first lead role, something he was very proud of. And something he put his heart and soul into. And if you see the film, his heart and soul are at the heart of the film, âexplains his mother.
She says it’s “pretty hard” to have to watch him, knowing that his life has been cut short at such an age.
âAt the same time, we want to be there, we are his voice, we are him,â she says. âAnd so we have to introduce ourselves. We are alive and we have to show ourselves and be his voice. “
Cameron Boyce was born in Los Angeles in 1998. In an interview a few years ago with People magazine to mark Black History Month, he revealed that his paternal grandmother, Jo Ann Boyce, had been one of the Clinton 12 children of Clinton, Tennessee, who in 1956 became the first African Americans in the southern United States to attend integrated high school.
âMy Nana stood up for what she believed in and did something amazing,â he said, then 15. that, you are a better person because of that.
Boyce got his first role in a major 2008 thriller movie, Sharp eye, and Mirrors. He had his first role in a comedy in the film produced by Adam Sander The adults, in 2010.
A year later, he landed his first leading role in the Disney Channel. Jessie, which tells the story of a young girl who moves from Texas to New York, and the friends she makes. For four years, Boyce played the role of Luke Ross.
He then plays the role of Carlos de Vil, the teenage son of Cruella de Vil, in the fantastic musical. Offspring, appearing in each of the franchise’s three films, and supporting several spin-offs. As it stands, he suffered the fatal attack before the release of the third film.
Disney star Cameron Boyce has died aged 20
Boyce’s parents say from an early age he wanted to take on more difficult roles. In the movie Runt, directed by William Coakley and produced by Carl Rumbaugh and Gregory Thomas, that’s exactly what he did.
The film was first released in 2020 at the Mammoth Film Festival in Mammoth Lakes, Calif., Where it won an award. Her premiere took place in September 2021, at the TCL Chinese 6 Theater in Hollywood, which her parents both attended.
His parents say that as a child Boyce sought to use his fame to help various charitable causes.
One particularly close to his heart was the California-based Thirst Project, which helps bring clean water to underdeveloped countries. He has taken walks to raise funds for homeless organizations and worked with Make-A-Wish America, a charity that works to “create life changing wishes for children with serious illnesses.”
âHe was always aware, he was a very, very intuitive and insightful human. He always cared about others. It was obvious the minute you could see her emotions, âher mother said. âHe loved his family, he loved his friends and he always wanted to help others. “
She adds, âWhen the Make-A-Wish kids come. He would just spend the whole day with them. They were the king or queen of his world at the time 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 passed away on July 6, 2019, he was only 20 years old. His parents initially released a statement saying he had “died in his sleep due to a seizure that was the result of a persistent health problem for which he was being treated.”
They added, âThe world is now without a doubt without one of its brightest lights, 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.
âWe are still trying to navigate our way through this extremely heartbreaking time and continue to ask for privacy so that the family, and all who knew and loved him, can mourn his loss and make arrangements for his funeral – which in itself is scary, âthey said.
Adam Sandler was among the many actors who had performed with him to pay tribute to him.
âI loved this kid. Cared so much for his family. I cared about the world so much, âhe tweeted. âThank you, Cameron, for everything you’ve given us. So much more was on the way. All of our hearts are broken.
Boyce’s parents said they had long tried to figure out what had happened. They themselves knew little about the complexities or the fact that seizures triggered by the neurological disorder can be fatal. This is something that they and their foundation are trying to correct.
They say their biggest discovery on their trip was the lack of awareness they discovered about the disease.
âAs there is little awareness and as little is discussed. It’s the number one neurological disease and we don’t talk about it, âsays Boyce’s mother.
âPeople, for some reason, don’t feel free to discuss their diagnosis. There is simply not enough awareness and there is not enough education for those newly diagnosed. “
She adds: âOne in twenty-six people suffers from epilepsy. Everyone knows someone who has epilepsy, but we never talked about it.
Why do they think it is?
âBecause it’s stigmatized. It is as if homosexuals were locked up. It’s similar to people with mental health issues, [and people] try to hide it because you are stigmatized and marginalized, âBoyce’s father said.
“One of the things we’re going to do is de-stigmatize it, bring it into the mainstream, bring it out from under the rug and bring it to light.”
He adds: âLet’s talk about it, because people with epilepsy need information. They need to know what to do if they have a seizure. We try to provide people with information and connect them with the right kind of health care providers and the right kind of hospitals.
At the heart of the foundation’s efforts is providing practical information to people with epilepsy, as well as their friends and family, to answer the most basic question – “what now?” “
For example, if someone has just had a seizure, what now?
âAfter your seizure is over, make sure someone takes you to the emergency room to rule out any serious medical problems. You should then talk to your doctor about the possibility of seeing a specialist, âthe website says.
Another question is: ‘I just heard about SUDEP, what now?’.
The website says, âSudden Unexpected Death in Epilepsy or SUDEP is a real event although it is rare for people with epilepsy. Be sure to talk to your specialists about ways to reduce your risk.
Boyce’s parents say they hope that by providing this most basic information, as well as increasing awareness of epilepsy, they can make a positive contribution. If they can, when the loss of their son will be no less terrible to bear, they will have tried to help others.
The couple say they believe deaths from epilepsy are underreported because coroners rarely consider them a cause of death. And if the research continues, it is not huge. For example, after Boyce died, his parents learned that there are 40 different types of epilepsy.
âThere is a lot of research going on. But not as much as let’s say, for cancer or Parkinson’s disease and other diseases. So we want to multiply the research level by 100 and we want to destigmatize it, âexplains Boyce’s father.
âWe feel like even though we’re hardly epilepsy experts, we have a voice and a platform, and we want to work with experts and do research to help them get the funds they need. and the attention they need and deserve. , to get even more funding, so we can make an impact.
The couple say they have learned to grieve in different ways. Boyce’s mother says he speaks with others who have lost loved ones to epilepsy and “we all support each other on our grieving journey.”
His father says he looks mainly to his wife and daughter. Maya.
âFor me, group support doesn’t really work. It makes me even sadder. It’s like the club you don’t want to be in.
Both inspire people to visit their website and arm themselves with vital information.
Boyce’s mother says, âWe want to invite the epilepsy community and beyond to get involved. Obviously the people watching us the most are Cameron’s fan base, so we really want to go beyond that and support the epilepsy community.