For the parents of the deceased actor Cameron Boyce, viewing a newly released movie after his death is a complex issue.
Following a seizure, her son, who was 20 years old, tragically passed away two years ago. For Libby Boyce, this is an incredibly distressing ordeal. She reveals that not a single moment goes by without her thoughts drifting to her beloved child.
“Observing the speckle on his neck or any slight motion he performs, it’s truly genuine,” she expresses.
It feels so desolate that his absence is palpable. It is even more heartbreaking to not be able to give him a hug or talk to him afterwards. Victor, the father, experiences the heart-wrenching feeling of watching the film Runt and not being able to see his son, Boyce.
Both parents said they did not know that someone could die from epilepsy. They are in firm agreement that they need to use the film to raise awareness about epilepsy, which is still not entirely understood by doctors and is referred to as SUDEP, an unexpected and sudden death.
His mother states, “the essence of the film is his innermost being and spirit. And something that he dedicated his utmost passion and dedication to. Something he felt immense pride in is a film that Cameron starred in for the first time. Observing him in the film is a bittersweet experience.”
She characterizes it as “quite difficult” to have to observe it, recognizing that his life was tragically cut short at such a tender age.
She says, “We have to show our voice and be alive, and we want him to be there at the same time.”
Boyce Cameron was born in Los Angeles in 1998. He was the first African-American to attend an integrated high school in South America. He revealed in a recent interview with People magazine that his paternal grandmother, Ann Jo Boyce, was one of the 12 children from Clinton, Tennessee, who were called the Clinton 12. This marked a significant moment in Black History Month.
He said, “If you face adversity and things happen in your life, you’re going to learn and grow from that because you’re a better person. Amazingly, Nana My stuck up for what she believed in and I was impressed by that when I was 15 years old.”
In 2010, he landed his inaugural part in a comedy featured in the Adam Sandler-produced Grown Ups. Boyce obtained his primary role in a significant motion picture in the 2008 suspenseful movies, Eagle Eye, and Mirrors.
Luke Ross portrayed the character of Boyce for a duration of four years. In the Disney Channel’s Jessie, he secured his initial starring role a year later, depicting the friendships he forms and narrating the tale of a youthful girl’s relocation from Texas to New York.
He played the role of Carlos, the teenage son of Vil de Cruella, in the fantasy musical Descendants. He appeared in several spin-offs and three movies of the franchise before he suffered a fatal attack, which happened before the release of the third film.
Merely that, he accomplished. Rumbaugh and Gregory Thomas created the film Runt, helmed by William Coakley. Since a young age, Boyce’s parents claim that he aspired to undertake more demanding characters.
His parents, too, were present at the debut held at the TCL Chinese 6 Theater in Hollywood, which took place in September 2021. The film received recognition at the Mammoth Film Festival in Mammoth Lakes, California, where it was initially screened in 2020.
His parents say that when he was a child, Boyce had endeavored to utilize his fame to aid numerous philanthropic endeavors.
“Make-A-Wish, a charity in America, works to create life-altering desires for children facing serious illnesses. He participated in walks to raise money for organizations assisting the homeless. One organization that was particularly dear to him was Project Thirst, a California-based initiative that helps bring clean water to underprivileged countries.”
“According to his mother, he always wanted to assist and loved his friends, and he loved his family. It was evident from the minute you could see his emotions. He always cared about other people. He was a very insightful and intuitive human being, always aware.”
“And he didn’t take that as a given. People held great significance for him and he comprehended that. He was present with them in the moment, treating them as the rulers of his universe. He would dedicate his entire day to them when the Make-A-Wish children would visit,” she includes.
According to his parents, Boyce passed away in his sleep at the age of only 20 due to a seizure caused by an ongoing medical condition he was receiving treatment for on July 6, 2019.
“We are completely devastated,” they stated. “However, his essence will endure through the benevolence and empathy of everyone who was acquainted with and adored him. The globe is unquestionably lacking one of its most brilliant beacons now.”
A few days later, the family confirmed that the young man had experienced epilepsy.
They expressed, “Experiencing great pain is inherent, and we are making preparations for his funeral and grieving his loss. We kindly request that his loved ones and all those who knew him respect our need for privacy during this incredibly difficult and emotionally challenging time as we continue to find our way through.”
Adam Sandler was one of several actors who had acted alongside him to pay homage.
He posted on Twitter, “Adored that child. Showed a great deal of concern for his family. Showed a great deal of concern for the world. Our hearts are all shattered. There was so much more to come. We are grateful to you, Cameron, for everything you bestowed upon us.”
Boyce’s parents said that they had tried for a long time to understand what had happened, as they knew very little about the complexities of the neurological disorder that can be triggered by seizures and can be fatal if left untreated.
They claim that the most significant revelation during their trip was the insufficient knowledge they encountered regarding the condition.
Boyce’s mother states, “It is the top neurological disorder, and we refrain from discussing the extent of its lack of awareness and limited conversation.”
There is not enough education and awareness for those who are newly diagnosed. For some reason, people do not feel free to discuss their diagnosis.
She states: “One in every twenty-six people experience epilepsy. Every person is acquainted with someone who has epilepsy, yet we have never engaged in a conversation about it.”
What is the reason behind their belief?
Boyce’s father expressed, “and individuals face marginalization, they encounter stigma due to its resemblance to individuals with mental health challenges, and individuals attempt to conceal it. It is akin to gay individuals remaining secretive about their identity because of the societal stigma.”
In order to illuminate it, to remove it from hiding, to incorporate it into the mainstream, one of our strategies will be to eliminate the stigma surrounding it.
We’re trying to put people at ease and provide them with the right kind of health care, and we’re trying to arm them with information. Let’s talk to people with epilepsy because they need to know what to do if they have a seizure, “he adds.
At the core of the foundation’s efforts is the provision of practical information to individuals diagnosed with epilepsy, answering their most basic and very important question: “What now?” This includes support for their family and friends.
For instance, if an individual has recently experienced a seizure, what should be done next?
The webpage states, “Subsequently, it is advisable to consult your physician regarding the possibility of consulting a specialist. Following the conclusion of your seizure, it is imperative to arrange for someone to transport you to an emergency department in order to eliminate any potential grave medical issues.”
Another inquiry would be, ‘I recently discovered SUDEP, so what should I do now?’.
Make sure to talk to specialists to decrease your risk. The website says that SUDEP, or Sudden Unexpected Death in Epilepsy, is a rare but real occurrence for those living with epilepsy.
Boyce’s parents say that they will try to make a positive contribution and that their son’s loss will not be any less terrible. They will also try to help others by raising awareness about epilepsy and by providing the most fundamental information.
There are 40 different types of epilepsy, and in some instances, parents have learned about it after the death of their child, like in the case of Boyce. It is not uncommon for epilepsy-related deaths to be under-reported, as coroners often do not identify epilepsy as the cause of death. There is a belief that there are a couple of reasons for this under-reporting, and researchers are continuing their efforts to address this issue. It is important to note that this is not a widespread problem.
Boyce’s father says, “We want to destigmatize the desire we have and increase the level of research by 100-fold. There is a lot of ongoing research for other diseases such as Parkinson’s or cancer, but not nearly as much.”
In order to make a significant impact, to secure additional funding, and earn the recognition they deserve, they require the necessary attention to assist them in obtaining the required funds and conducting research. We aim to collaborate with knowledgeable professionals who specialize in epilepsy and actively engage with individuals. Additionally, we aspire to establish a platform where our voice can be heard, despite feeling like our expertise in epilepsy is often overlooked.
“We all provide mutual support throughout our process of mourning,” expresses Boyce’s mother. He converses with individuals who have experienced the loss of their beloved ones due to epilepsy, the pair assert that they have acquired the ability to mourn in distinct manners.
His father mentions that he primarily relies on his spouse and their daughter, Maya.
“Being in that particular club is something I find undesirable, as it intensifies my sadness. The concept of group support doesn’t seem to be effective in my case.”
Both encourage individuals to explore their website and equip themselves with vital information that can save lives.
We really want to be a part of the epilepsy community and go beyond just getting support. It’s obvious that people who watch us, Cameron’s fan base, are the ones we want to invite to be involved in epilepsy support. Boyce’s mother says this.