How Cameron Boyce's Parents Are Keeping His Epilepsy Awareness Mission Alive

The sudden and tragic loss of actor Cameron Boyce was caused by Sudden Unexplained Death in Epilepsy (SUDEP), a condition many remain unaware of despite its serious risks. Certain factors can heighten the likelihood of SUDEP in individuals with epilepsy.

Libby and Victor Boyce never imagined waking up to find their vibrant son Cameron having a seizure. Over three years, Cameron was diagnosed with epilepsy and experienced multiple seizures, with the final one tragically ending his life.

Cameron Boyce was not only a gifted actor, dancer, and singer beloved for his Disney Channel roles but also a compassionate humanitarian. His parents describe him as an “old soul” whose kindness deeply touched everyone he met.

Victor Boyce recalls, “Even while managing his own challenges, Cameron would visit every child in the hospital ward, giving selflessly without hesitation. He truly had a heart of gold.”

Unexpected Symptoms and Limited Guidance

At age 16, Cameron experienced his first seizure. Despite the frightening experience, initial medical guidance was minimal and left the family confused and underprepared.

“When Cameron was diagnosed, we received only a generic pamphlet with little detailed information,” Victor shares. “Doctors didn’t emphasize the seriousness, so we weren’t alarmed and carried on as usual.”

Though Cameron’s seizures were infrequent, the Boyces believed the medication was effective. It wasn’t until his fourth seizure that concerns grew, but Cameron insisted he could manage, continuing his work and travels with determination.

Understanding SUDEP: A Hidden Danger

Cameron’s death was officially attributed to SUDEP, a sudden and unexplained fatality in epilepsy patients who otherwise appear healthy. The Boyces were shocked to learn about SUDEP only after their loss.

“Even medical professionals in our family hadn’t heard of SUDEP,” says Victor. “It was a complete shock to us when the coroner revealed this as the cause.”

According to the CDC, SUDEP affects approximately 1.16 per 1,000 people with epilepsy annually, making it the leading cause of epilepsy-related death. However, many cases go unreported, suggesting the true numbers may be higher.

Risk factors for SUDEP include frequent uncontrolled seizures, convulsive seizures, early onset epilepsy, medication noncompliance, and alcohol misuse. Cameron’s case was unique, with only some risk factors such as nocturnal seizures and being a young adult male.

The Cameron Boyce Foundation: A Legacy of Awareness and Hope

Motivated by their experience, the Boyces launched The Cameron Boyce Foundation (TCBF) to honor Cameron’s legacy through epilepsy education and advocacy.

“We wanted to continue Cameron’s spirit of helping others, especially by raising awareness about epilepsy, a cause rarely championed by celebrities,” explains Victor. “His voice remains vital in the fight against epilepsy.”

Mission and Impact

TCBF aims to destigmatize epilepsy, provide vital information, and support research toward a cure. The foundation’s “Now What?” campaign offers resources for newly diagnosed individuals, including fact sheets, emotional support, and educational videos.

Despite the National Institutes of Health investing billions annually in medical research, epilepsy receives less than half a percent of funding, a disparity the foundation seeks to address.

Guidance for Those Newly Diagnosed

The Boyces recommend keeping a detailed seizure journal and seeking care from specialized epileptologists at Level 4 Epilepsy Centers, which provide comprehensive diagnosis, treatment, and surgical evaluation.

“If we could do it over, we’d consult an epileptologist immediately,” Libby advises. “Specialized care makes all the difference.”

TCBF also educates friends and family on seizure first aid, emphasizing calmness, safety measures, and when to call emergency services.

Seizure First Aid Essentials

• Remain calm and do not panic.
• Protect the person’s head and gently turn them onto their side.
• Loosen tight clothing around the neck.
• Avoid giving food, drink, or medication until fully alert.
• Never restrain or place objects in their mouth.
• Stay with the person until recovery.

Call 911 if it’s the first seizure, the seizure lasts more than 5 minutes, seizures occur back-to-back, or if the person is injured or has trouble breathing.

Support and Resources

TCBF partners with Citizens United for Research in Epilepsy (CURE) to expand their reach and invites those affected by epilepsy to join their support group for community and resources.

Continuing Cameron’s Compassionate Spirit

For the Boyces, their foundation is a heartfelt tribute to Cameron’s generosity and kindness.

“We feel entrusted with continuing his mission to help others,” Victor shares. “Honoring Cameron means raising awareness and supporting those impacted by epilepsy.”

“He would have given his life to save someone else—that was just who he was,” adds Libby.

Crystal Hoshaw is a mother, writer, and yoga practitioner dedicated to mindful self-care. She shares wellness insights through online courses and social media.

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