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.
“He’s the kind of kid that—even though he was dealing with his own thing—he would go to children’s hospital and visit every kid on the ward and would not leave until he saw every single person,” says Victor Boyce. “He would literally give you the shirt off of his back. I’ve seen him do it.”
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 had few seizures compared to others the Boyces knew with epilepsy. This seemed to be a good sign.
“We thought [the medicine] was working because another year went by before he had another seizure,” says Victor Boyce. “We should have done much more of our own research, but we were told, basically, it’s not a big deal.”
When Cameron had his fourth seizure, it was bad enough that Libby Boyce wanted to change doctors.
“I was a little upset about it, and he was like, Mom, I can handle it,” she says. “I believed him, because whatever my son set out to do, he did.”
Cameron did manage. He continued to work, travel, and shoot movies, seemingly unaffected.
“We knew, obviously, it was going to be an issue in his life, but I never thought it was going to be something that would take his life,” Libby Boyce shares.
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
However, experts believe the numbers are even higher because many SUDEP cases are likely not reported.
The risk of a seizure being fatal
These include:
- history of frequent, uncontrollable seizures
- convulsive or tonic-clonic seizures
- having seizures since you were very young
- a long history of epilepsy
- not taking anti-seizure medication as prescribed
- alcohol overuse
However, a few factors did apply.
For instance, SUDEP is
- experience seizures
while sleeping , known as nocturnal seizures - are young adult males
- sleep on their
stomachs
Still, the Boyces hadn’t received this information from their doctors.
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 mission
The mission of TCBF is to provide information about and destigmatize epilepsy, as well as contribute to research toward finding a cure.
“Back in the olden days when people had seizures, people thought they were possessed by the devil,” says Victor Boyce. The stigma “goes back, way, way back. It’s not witchcraft, it’s a medical condition and it’s not something that needs to be hidden away.”
The foundation’s “Now What?” campaign empowers people newly diagnosed with epilepsy to take control of their health with fact sheets, emotional support, video content, directories, and more.
In addition, the foundation aims to raise awareness and funds for epilepsy research.
According to the foundation website, the National Institute of Health NIH spends more than
“For some reason, it gets swept under the rug, especially if you compare it to cancer or Parkinson’s or any of these other so-called mainstream diseases,” says 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
- evaluation for surgical procedures for epilepsy
“If I could do it again I would see an epileptologist, because we saw a garden variety neurologist, and I didn’t feel comfortable with them,” says Libby Boyce.
“You need a specialist,” adds Victor Boyce.
You can find level 4 epilepsy centers through the NAEC directory. TCBF also offers a searchable map on their website.
TCBF also advocates to arm friends and family with the information they need to provide support during emergency situations and beyond.
This includes education around what to do when a loved one
What to do during a seizure
- Stay calm. Don’t panic.
- Cushion the person’s head and turn them on their side.
- Loosen any clothing that might restrict breathing.
- Don’t offer food, eater, or medication until they’re fully awake.
- Don’t restrain them or put anything in their mouth.
- Don’t leave.
Call 911 if:
- You think this is their first seizure.
- Their seizure lasts longer than 5 minutes.
- Seizures happen one after another.
- The person is hurt or injured.
- They have trouble breathing or are choking.
- The seizure occurs in water.
- They don’t return to their usual state of
- consciousness.
- If you don’t feel equipped to handle the
- situation.
You can also share this pamphlet from TCBF with friends and loved ones of a person with epilepsy.
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.