When Victor and Libby Boyce lost their 20-year-old son Cameron to SUDEP (Sudden Unexpected Death in Epilepsy Patients) in 2019, his death came as a tragic and devastating shock. A young actor with a burgeoning career, earning credits in movies such as Grown Ups 2 and Disney’s Descendants franchise, Cameron left an unshrinkable void in […]
When Victor and Libby Boyce lost their 20-year-old son Cameron to SUDEP (Sudden Unexpected Death in Epilepsy Patients) in 2019, his death came as a tragic and devastating shock. A young actor with a burgeoning career, earning credits in movies such as Grown Ups 2 and Disney’s Descendants franchise, Cameron left an unshrinkable void in the hearts and minds of everyone that knew him.
And while this grief can never be cured, Cameron’s father Victor, and the whole Boyce family, are able to move forward because they have a passionate desire to raise awareness of SUDEP. Mercifully energized by a therapeutic relationship with competitive cycling, Victor bravely shares the family mission in a conversation with M&F.
In the United States, 1 in 26 people are living with epilepsy. Of those sufferers, it is estimated that more than 1 in 1,000 will die from SUDEP, and yet all too many people are totally unaware of the risk. Cameron had only 5 seizures in his lifetime between the ages of 17 and 20 years. “Previous to his first seizure, he had no symptoms whatsoever, with the exception of when he developed colic as an infant. Cameron rarely ever got sick,” explains Victor. “When he had his first seizure, we were not sure what happened at all until a doctor explained it. It was confusing and surprising in the worst way.” Seemingly under control after his epilepsy diagnosis, his seizures were spaced out at around a year apart. “Not only was Cameron not ill, but he was also thriving in his life and career,” says Victor. “We were completely blindsided by his passing because he was so healthy.”
Epilepsy is a condition of the brain that causes bursts of electrical activity, resulting in seizures. It is an ailment that can begin at any age, but usually begins in childhood or in those people who are over 60. Symptoms include involuntary shaking, also know as a “fit.” If you think you have experienced a seizure, it is important to seek medical advice. While there are treatments available to help control epilepsy in many cases, SUDEP is still not completely understood.
Very soon after his passing, the Boyce family set about forging a foundation in honor of Cameron. “Originally, it was to continue the charitable works that Cameron was already doing on his own,” says Victor. “We didn’t want that to end with his passing. It was difficult at first for many reasons, not the least of which was that we had no idea how to run a foundation. It’s been a steep learning curve, but now we have a strong team and a clear focus for what we want to achieve. We are tiny compared to other more well-established epilepsy foundations, but we have a unique platform because Cameron is so beloved. Our main goal is epilepsy awareness and research.”
Since its inception, TCBF (The Cameron Boyce Foundation) has raised more than $1 million and casts a much-needed spotlight on a disease that is often afforded too little attention. “We are truly blessed to be supported by young adults that grew up watching Cameron on TV and in movies. They are our core supporters. Notable people that have been instrumental in helping us include Adam Sandler, Sofia Carson, Dove Cameron, Salma Hayek, Maz Jobrani, Wendy Raquel Robinson and many, many more,” says Victor. TCBF has also partnered with CURE Epilepsy to fund research grants, helping scientists with their quest to cure and control all forms of epilepsy.
“My son was born with a magnetism that is hard to put words to,” shares Victor. Working with the TCBF is important but understandably heavy work for a grieving father, but fortunately he’s been able to lean on his love of cycling to get some mental and physical relief. “As a kid, I got freedom by going out on a bicycle. You can travel a lot farther by bike than by walking. As an adult, it’s more of a daily therapy,” he shares. “Many people think of cycling as ‘exercise’ but for me it’s more mental. Cycling clears my mind of the stresses of life. Cycling has pushed me out of my comfort zone to do the things that I previously thought were impossible. For example, in 2020, I accumulated over 1,000,000 vertical feet of elevation gain in one year. As daunting as that sounds physically, it’s the mental fortitude and dedication that is more difficult.”
Victor has really found his groove with cycling. “I ride with a great group of men and many of us compete in organized races and events,” he explains. “Last year I was part of a four-man team that won an eight-hour, cross-country, marathon mountain bike race. We also do gravel bike events such as the ‘Rock Cobbler,’ and that is brutal! Adrenaline and dopamine are powerful motivators to get out and move. When you feel better your mood is better which in turn helps your relationships with family and friends. When you are fit you are more confident and comfortable in your own skin.”
Finding comfort and comaradery through cycling has been a great distraction for Victor. “It’s interesting how small the cycling community is,” he explains. “Most of the people I ride with are friends of friends. Some are my neighbors and many others are people who I’ve met on Strava. It’s been very organic and some of the people I’ve met have become dear friends. Recently, my wife and I, and four other couples went on a cycling trip to the Netherlands. It was the trip of a lifetime.” For Victor, having meaningful conversations is also essential to his work with the TCBF. “I encourage those with epilepsy to talk about it,” he says. “Get first aid/CPR trained, be armed with knowledge, visit TheCameronBoyceFoundation.org, and be supportive of the epilepsy community.”