Libby Boyce was unwillingly thrust into the spotlight alongside her husband, Victor Boyce, in July of 2019, following the passing of their son, actor Cameron Boyce. Cameron died in his sleep at the age of 20 due to SUDEP (Sudden Unexpected Death in Epilepsy Patients), leaving his loved ones (and the world) heartbroken. Fueled by love and immense courage, Libby and Victor knew that they needed to create The Cameron Boyce Foundation, to raise awareness for epilepsy by bringing this perplexing disease out of the shadows. Libby’s resilience, strength, and determination is no doubt an inspiration to others… with so many who have been faced with unthinkable loss, she has taken her pain and turned it into hope. We spoke with Libby about why it’s so important for her to keep moving forward, and why self-care is essential–especially in the face of tragedy:
1) Your son Cameron was such a light, and beloved by so many prior to his tragic passing in 2019… What can you tell our readers about The Cameron Boyce Foundation and its mission?
At first it was a knee jerk reaction to losing Cameron, but we wanted to continue his philanthropic efforts, and inspiring youth towards positivity. Pretty quickly we realized that we needed to learn more about epilepsy. Once we delved into the disease that took Cameron’s life, we knew we had to use our voices in place of his to focus on epilepsy research and awareness. It is the most common neurological disease yet we know the least about– and it does not get the attention it warrants. If not us, then who? Not many well-known people who live with epilepsy talk about it, which further stigmatizes an already stigmatized disease.
2) Those who know you call you a “fierce warrior.” What advice do you have for others when it comes to coping with grief?
The “fierce warrior” moniker is interesting. If that term was used to describe my work in caring for and solving homelessness in Los Angeles County, I would say YES-I am a fierce warrior along with many other fierce warriors. But in relation to my work with The Cameron Boyce Foundation (TCBF), I don’t feel as though I have a choice. I didn’t want this role. I would give it up in a second to have my Cameron back! In lieu of that impossibility, I use my work at TCBF as a distraction; a way to honor and to be close to Cameron and the friends/family/fans who love him. One way that grief has surprised me is that for most people who have endured a tragic loss, they want to talk about their loved one, hear about their name and keep their love of the person in the forefront. So, people supporting friends and/or family through a traumatic loss, should NOT shy away from talking about the loved one. Don’t stay away to give the mourner space. This type of “space” creates secondary losses. Be honest and just ask-“how can I support you”?
3) Why would you say it’s so important for others to engage in philanthropy and/or giving back to their community? Would you agree that it feeds the soul?
I think this is as individual as any personality trait. For those who grew up in an environment that gave or received philanthropic assistance, there is a deep appreciation regarding the kindness of others and giving back…paying it forward feels amazing! But we all know people who do not have this trait. In my experience, they are not as fulfilled in this life. Cameron once shared a sentiment he heard Denzel Washington say “You never see a U-haul behind a hearse”. Simple statement, but a powerful one! Personally I take great joy in helping others. I always have and Cameron came by it honestly.
4) As one of the voices for TCBF, you’ve been thrust into the spotlight. What has this process been like for you?
Prior to losing Cameron, I never felt competent when speaking in public outside of my work environment. I would watch him with amazement at the ease he displayed when being interviewed. Within a few weeks of Cameron passing, we were interviewed by the lovely and brilliant Robin Roberts. I was nervous, BUT I kept telling myself to just answer the questions honestly and ignore the cameras. Since then, I just channel Cameron.
5). Self-care is so crucial when it comes to maintaining our mental and emotional well-being. How would you say you take care of yourself, or treat yourself?
I surround myself with amazing friends and family. I take lots of walks, work very hard at my job, belong to several support groups, get massages regularly to relax, paint, and sometimes watch dumb television. Lots of distraction helps me a lot.
6) When you need to get away from the day-to-day, what’s your go-to when it comes to a vacation?
This really depends on if it is a family vacation or friends vacation. If it is with Victor (my husband), it has to involve bicycles for him to maintain his emotional harmony. We recently rode through Zion and we are going to Amsterdam in spring to bicycle through the tulips. If I am with my girlfriends, I go to Mammoth a lot because my best friend has a condo there. I recently vacationed on a boat in the pacific northwest which was heavenly. I grew up in Connecticut, so I go back east often and visit my brother’s family and my daughter Maya in Boston while she is in college there. My brother has a house in Cape Cod which we visit every couple of years as well. All this said, I have a long bucket list!
7) Lastly, for those who may not know much about epilepsy, what should they know? What can others do to help bring epilepsy from the shadows?
Everyone knows someone with epilepsy. Get educated about what to do and NOT to do if they witness a seizure. Find out their triggers and support them in being on top of their care. If you or someone you know gets a new diagnosis of epilepsy, I encourage everyone to see an epileptologist, which is a neurologist who specializes in epilepsy. Ask lots of questions, read up, keep a journal to learn triggers, etc. Be armed with knowledge.
To learn more about The Cameron Boyce Foundation please visit their website, and follow them on social media @TheCameronBoyceFoundation.
Photo credit: Larry Hirshowitz
