The parents of late Disney star Cameron Boyce still regularly break down in tears when they think about him.
They show up to talk about him anyway, as they did on a recent episode of US talk show The Doctors, to help others learn more about the condition that killed him.
Victor and Libby Boyce explained that Cameron died in his sleep, the morning of July 6, of a specific condition they hadn’t previously heard about, even from his doctors. It’s called SUDEP, which stands for sudden unexplained death in epilepsy.
They made the appearance, they said, to bring awareness, so they can prevent another family from experiencing a loss like their own.
“Every day is very hard,” Libby said.
Both parents broke into tears in video footage of a pre-interview shown during the episode.
The Descendants star hadn’t had his first seizure until he was 16, they revealed. After he had another one at 17, he was diagnosed.
Libby explained that Cameron eventually went on medication to prevent seizures, but she said they had never realised their son could die from the seizure itself. They were worried about him, for example, hitting his head or drowning if he had one unexpectedly.
“We definitely did not know it could be fatal,” she said.
Victor & Libby Boyce talk about raising awareness for #SUDEP (Sudden Unexpected Death in #Epilepsy) through #TheCameronBoyceFoundation. Plus, learn how to lower your risk & reduce triggers from Sally Schaeffer of @EpilepsyFdn. #kNOwSUDEPnow @kNOwSUDEPnow https://t.co/qito9GtUPf— The Doctors (@TheDoctors) January 13, 2020
The Mrs. Fletcher actor experienced five seizures over the course of his short life. They always occurred while Boyce was sleeping and the worst effect he experienced, his mom said, is that he would bite his tongue and wake up with a headache.
Victor recalled that, the last time he was with his son, the family enjoyed dinner out.
“We were sitting outside joking and laughing like we always do,” he said. “It was just a really fun night.”
The next morning, Victor got a terrible call from Cameron’s roommate.
“It was like all of a sudden I was in a cloud,” Victor said. “I was just … everything just went white.”
He described it as “a nightmare”: “I’m not supposed to outlive my son.”
In addition to their medical activism, the Boyces created the Cameron Boyce Foundation to support young people changing the world through causes that were important to him, including epilepsy awareness.