Parents of late actor Cameron Boyce push for epilepsy cure: 'We felt betrayed'

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Disney star Cameron Boyce was 17 when he was diagnosed with epilepsy. He had suffered only five seizures in his life, including the fatal one in 2019. After his death, his parents Victor and Libby Boyce began to learn more about his diagnosis – and how little they and his doctor had known about Cameron's epilepsy. 

Amid their grief, they launched The Cameron Boyce Foundation to carry on his legacy and advocate for those with epilepsy, with a goal of finding a cure for sudden unexpected death in epilepsy. Most cases of SUDEP, like Cameron's, happen during or immediately after a seizure – a fact neither he nor his parents knew.

Dr. Vivek Mehta, an epileptologist at Hoag Memorial Hospital in Orange County, California, which has a Level 4 epilepsy center, is a board member for the nonprofit foundation formed by Cameron's parents.

"The unique partnership between Hoag and TCBF allows us to address epilepsy care in multiple dimensions including clinical neuroscience, public health, disease awareness, and patient and family empowerment,” he said in a statement.

Cameron's parents are sharing his story, their story, to bring awareness to epilepsy and to their "Now What" campaign, created for those recently diagnosed. Libby and Victor recently answered questions from Paste BN Opinion. The exchange has been lightly edited.

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Question: Cameron was 20 when he died. He had epilepsy? 

Answer: Yes, Cameron was 20 years old when he passed away unexpectedly from sudden unexpected death in epilepsy, which occurs when you have a seizure and you pass away during the seizure.

Q: Since Cameron’s death, what have you learned about his diagnosis that you wish you and he had known before? 

A: We didn't know about SUDEP until we were told by the coroner that this caused his death. We were not provided with any tools when he was diagnosed with epilepsy. The doctor did not go into any detail about epilepsy, the cause or precautions. We received no pamphlets, no suggested reading, no information about how to live with epilepsy.  Cameron was given medication and we all went on our way. Obviously we would like to have known that SUDEP was a possibility and the likelihood of future seizures, etc. We also would have greatly benefited from knowing the difference between an epileptologist and a neurologist and about health care institutions that specialize in epilepsy. 

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Q: How frustrating was it to learn about SUDEP after Cameron died? Did that change your grieving? 

A: We felt betrayed by epilepsy and our health care providers. However, we are not convinced that if we knew about SUDEP that we could have changed the outcome.  Epilepsy is very unpredictable and if a person does not have regular seizures, which Cam did not, then exploring how your medications are or are not working becomes a challenge. In some ways, this lack of control helps us not feel too guilty as parents because there was so much unknown.

Q: Can you talk about when Cameron was diagnosed? What resources were available? What kinds of support? 

A: When Cameron was diagnosed in 2017, we were only provided with medication. We were not given any other information about epilepsy and how to live with it. I continue to feel guilty that we did not do more investigation, but the doctor who diagnosed him seemed so blasé about the diagnosis, that we weren't really concerned. We do not think we could have changed the outcome because he was not having regular seizures.

 Q: So you’ve created The Cameron Boyce Foundation. What do you hope to provide – what are you already providing – to those with epilepsy and their loved ones? 

A: We would ultimately like to cure epilepsy, but in lieu of that, we want to raise awareness and the attention on epilepsy. Not enough people talk about epilepsy, yet it is the most common neurological disease. We would like to advocate for laws that require coroners to document epilepsy/SUDEP as the cause of death for those who die due to epilepsy (they often use heart or pulmonary failure as the cause of death). This would help in raising more dollars for epilepsy research. Lastly, we want to give newly diagnosed family members tools immediately that can help them navigate the health care system. Our "Now What" campaign that we launched in November aims to address this very issue.

Learn more: Epilepsy resources from The Cameron Boyce Foundation

Q: How else do you honor and remember Cameron?  

A: By trying to make decisions with him in mind. He was such a wise and thoughtful human, I think his close knit family and friends always ask, "What would Cameron do?"  He is our compass!

Q: What is one thing you would want Cameron’s fans and friends to know or ask them to do to honor his legacy? 

A: Promote tolerance and equality for all and always be kind and help the underdogs.

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 Q: What is the Now What campaign and what are you hoping others will take away from it?  

A: The Now What campaign targets families newly diagnosed with epilepsy and provides practical guidance and tools to begin to cope with the diagnosis. Hopefully, people will connect to this campaign so that whenever they hear about someone newly diagnosed, they will remember this campaign and look to us or any epilepsy organization for assistance and linkage to the epilepsy community. 

Victor and Libby Boyce are on the board of directors of The Cameron Boyce Foundation.