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Sep 27, 2023 · Libby Boyce is the mother of the late actor Cameron Boyce, who died from epilepsy in 2019. She and her husband Victor started the Cameron Boyce Foundation to raise awareness and funds for epilepsy research and support.
- Overview
- Sudden symptoms with few answers
- Cause of death: SUDEP
- The birth of The Cameron Boyce Foundation
- Post-diagnosis advice
- Resources
- Takeaway
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Sudden Unexplained Death in Epilepsy (SUDEP) took Cameron Boyce’s life. Certain factors can increase the risk for some individuals to suffer from SUDEP.
Libby and Victor Boyce didn’t expect to wake one morning to their otherwise healthy son, Cameron, having a seizure.
They didn’t expect Cameron to receive an epilepsy diagnosis and experience several more seizures all within the span of three years—the final proving fatal.
But that’s what happened.
Cameron Boyce—actor, dancer, and singer of Disney Channel fame—was a talented and lively artist as well as a humanitarian.
His parents describe him as a special person, an “old soul” who made an impression on the people he met.
After a successful and award-winning early career, Cameron experienced his first seizure at 16.
“We called 911,” says Victor Boyce. “And by the time we got into the ambulance and started going on our way to the hospital, he basically came out of it, and he seemed completely fine and normal. So I really was confused at that point.”
Just over a year passed until a second seizure led to an epilepsy diagnosis. Still, the confusion remained.
“We did not have a good experience as far as getting information when we first found out that Cameron had epilepsy,” says Victor Boyce. “A doctor handed me a pamphlet, like something you’d pick up on a bus. Very general information.”
The Boyces were left to manage on their own. Cameron’s doctors seemed to downplay the severity of the condition, and the Boyces developed a false sense of security.
“We weren’t alarmed, because nobody made us feel alarmed about it,” says Libby Boyce. “We just lived our life.”
Cameron’s final seizure took his life.
The official cause of death was Sudden Unexplained Death in Epilepsy (SUDEP), a diagnosis the Boyces weren’t prepared for.
“We didn’t know about SUDEP. We have family members who are doctors who never heard of SUDEP,” says Victor Boyce. “We were clueless, completely clueless. The first time we heard SUDEP is when the coroner told us that’s what took our son.”
They soon found out that SUDEP is the sudden, unexpected death of a person with epilepsy who was otherwise healthy.
After living with and helping manage Cameron’s epilepsy for three years, the Boyces were confused about how they hadn’t heard this term.
According to the Center for Disease Control and Prevention (CDC), there are 1.16 incidents of sudden death for every 1,000 people with epilepsy each year, making it the most common cause of death for people with epilepsy.
The suddenness of Cameron’s death and the mystery surrounding it led the Boyces to take action.
“Our first thought was to start a foundation that continued the things that Cameron was doing, which was homeless [support] and water initiatives and just general helping people and being the good guy that he was,” says Victor Boyce.
However, they realized that Cameron’s reach as a celebrity could be an effective tool to spread the word about epilepsy and help others like the Boyces avoid being “blindsided” by the reality of epilepsy.
Thus, The Cameron Boyce Foundation (TCBF) was born.
“No one else with any fame or any kind of name recognition has come out as an Epilepsy warrior,” says Victor Boyce. “Cameron’s voice is hugely important in the epilepsy world, and that’s kind of what sets us apart from other epilepsy foundations that are out there.”
As a relatable and recognizable celebrity, Cameron has “the capability, even after passing, to make an impact on helping to find a cure for epilepsy,” adds Victor Boyce.
The Boyces suggest that those who are newly diagnosed keep a journal of their seizures and write down any triggers associated with them.
They also urge individuals diagnosed with epilepsy to get a referral to an epileptologist and level 4 Epilepsy Center.
According to The National Association of Epilepsy Centers (NAEC), level 4 centers offer:
•a comprehensive team approach to the diagnosis and treatment
•intensive neurodiagnostic monitoring
•extensive medical, neuropsychological, and psychosocial treatment
TCBF partners with Citizens United for Research in Epilepsy (CURE) to broaden their impact.
They also invite those touched by epilepsy to join the TCBF Now What Epilepsy Support Group, which provides connection and additional resources for individuals and friends and family of those with epilepsy
Ultimately, the Boyces see their work as a continuation of Cameron’s giving spirit.
“This is something we feel that has been entrusted to us for whatever reason, and we’re not going to waste that,” says Victor Boyce. “This is the least we could do to honor his legacy.”
“He would give up his life to save others,” adds Libby Boyce. “That’s just who he was.”
Crystal Hoshaw is a mother, writer, and longtime yoga practitioner. She has taught in private studios, gyms, and in one-on-one settings in Los Angeles, Thailand, and the San Francisco Bay Area. She shares mindful strategies for self-care through online courses at Simple Wild Free. You can find her on Instagram.
Libby Boyce is the mother of Cameron Boyce, a late actor who died of SUDEP, a complication of epilepsy. She and her husband Victor founded The Cameron Boyce Foundation to raise awareness and funds for epilepsy research and support.
May 8, 2020 · As his mother, Libby Boyce, prepares to mark her first Mother's Day without her son, she reflects on her loss in an essay for "Good Morning America." Mother’s Day is a cherished day for mothers ...
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Jul 10, 2019 · Cameron Boyce ‘s parents are remembering the life and legacy of their son after his sudden and tragic death . In an exclusive statement to PEOPLE, Libby and Victor Boyce express their ...
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May 8, 2020 · Libby Boyce lost her son Cameron to Sudden Unexpected Death in Epilepsy (SUDEP) in July 2019. She shares her grief and her mission to raise awareness and end SUDEP in an essay for Good Morning America.
Nov 23, 2022 · Libby Boyce lost her son Cameron Boyce to SUDEP, a complication of epilepsy, in 2019. She and her husband Victor started The Cameron Boyce Foundation to fund research, education and awareness campaigns for epilepsy.
May 26, 2021 · Libby Boyce remembers her late son, "Descendants" star Cameron Boyce, as her first Mother's Day without him approaches. Courtesy Libby Boyce Friday, May 28, would been Cameron's 22nd birthday.
