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When Victor and Libby Boyce misplaced their 20-year-old son Cameron to SUDEP (Sudden Unexpected Death in Epilepsy Patients) in 2019, his dying got here as a tragic and devastating shock. A younger actor with a burgeoning profession, incomes credit in films comparable to Grown Ups 2 and Disney’s Descendants franchise, Cameron left an unshrinkable void within the hearts and minds of everybody that knew him.
And whereas this grief can by no means be cured, Cameron’s father Victor, and the entire Boyce household, are in a position to transfer ahead as a result of they’ve a passionate want to lift consciousness of SUDEP. Mercifully energized by a therapeutic relationship with aggressive biking, Victor bravely shares the household mission in a dialog with M&F.
In the United States, 1 in 26 persons are residing with epilepsy. Of these victims, it’s estimated that greater than 1 in 1,000 will die from SUDEP, and but all too many individuals are completely unaware of the chance. Cameron had solely 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 underneath management after his epilepsy prognosis, his seizures have been spaced out at round a yr aside. “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.”
What is epilepsy?
Epilepsy is a situation of the mind that causes bursts {of electrical} exercise, leading to seizures. It is an ailment that may start at any age, however often begins in childhood or in these people who find themselves over 60. Symptoms embrace involuntary shaking, additionally know as a “fit.” If you assume you have got skilled a seizure, you will need to search medical recommendation. While there are therapies out there to assist management epilepsy in lots of instances, SUDEP remains to be not fully understood.
The Cameron Boyce Foundation Is Working to Cure Epilepsy
Very quickly after his passing, the Boyce household set about forging a basis 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 greater than $1 million and casts a much-needed highlight on a illness that’s typically afforded too little consideration. “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 additionally partnered with CURE Epilepsy to fund analysis grants, serving to scientists with their quest to remedy and management all types of epilepsy.
Victor Boyce Gains ‘Daily Therapy’ Though Cycling
“My son was born with a magnetism that is hard to put words to,” shares Victor. Working with the TCBF is necessary however understandably heavy work for a grieving father, however luckily he’s been in a position to lean on his love of biking to get some psychological and bodily reduction. “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 actually discovered his groove with biking. “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 consolation and comaradery by means of biking has been an amazing 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 significant conversations can also be important 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.”