The Squeeze - Victor and Libby Boyce: Remembering Cameron and Epilepsy Awareness

Episode Date: September 27, 2023

This week the Lautners have the honor of sitting down with Victor and Libby Boyce, parents of child star Cameron Boyce, who passed away in 2019 from SUDEP (Sudden Unexpected Death in Epilepsy). They offer an inside look at the incredible life Cameron led and the legacy he left behind. They explain how and when epilepsy became part of their lives and how Cameron wasn’t considered epileptic until his second seizure. This is one of their many frustrations with the medical system, which failed to arm them. Their main message in coming on the podcast today is to take an epilepsy diagnosis seriously. There is a lack of information about epilepsy, despite there being so many different types and it being one of the most common neurological conditions. They were never even informed of SUDEP, the complication that took their son’s life. They talk about The Cameron Boyce Foundation, with the mission of raising awareness of epilepsy, discuss their grieving process, share what the outpouring of love has felt like, and offer advice on what to say to someone who has lost a loved one.   Cameron lives on through his sister, parents, friends, and The Cameron Boyce Foundation. We urge other people of influence to speak out if they suffer from epilepsy, and encourage you to check out the foundation to learn more about the disorder: www.thecameronboycefoundation.org  Thanks to our awesome sponsors for supporting this episode:  GreenChef — Go to GreenChef.com/60thesqueeze and use code 60thesqueeze to get 60% off plus free shipping  Earth Breeze — Subscribe to Earth Breeze and save 40%! Go to earthbreeze.com/thesqueeze   Jenni Kayne — Find your forever pieces @jennikayne and get 15% off with promo code THESQUEEZE at jennikayne.com/THESQUEEZE! #jennikaynepartner  Fast Growing Trees — Get 15% off your entire order when you go to FastGrowingTrees.com/THESQUEEZE, but only through OCTOBER 15TH  To email us your questions or share your story, you can reach out to [e-mail]. Be sure to rate, review, and follow the podcast so you don't miss an episode! Plus, follow us on Instagram, @thesqueeze and personally @taylautner and @taylorlautner + on TikTok @thesqueezepodcast  To learn more from The Lemons Foundation, follow @lemonsbytay on Instagram and visit lemonsbytay.com  Learn more about your ad choices. Visit megaphone.fm/adchoices See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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without your rice-adviseur or Sunnycars. I know my son very, very well. I know exactly what he would want me to do. I know that he would want us to continue living. I know that he would want us to take care of Maya. I know that he would want us to be good.

Yeah. I know he'd want us to embrace our family. I know all these things. So even though he's not here in body, like I know his heart and his heart came from us. So we just continue in that vein. When life gives you lemons, what do you do with them? Over here at the squeeze, We talk about it.

Hello, hello, hello. One more time, hello. And welcome to the squeeze. We are the Taylor Lautner's and we are thankful that you are joining us this Wednesday. Yes, grateful to see another Wednesday go by. Yes. Grateful to spend it with you guys. Grateful to have each and every one of you.

Yes. I hope your week is going well so far. And I know you're going to crush the rest of the week. Heck yeah. For now. Let's dive into some mental health. Woo-hoo. Just how we'd love to spend our Wednesday.

Yes. Get us for that help. We have a very special episode today. I have been waiting for this episode for quite some time. Yeah. When we first started the podcast, these two people were people that we knew we wanted on immediately. Yeah. Didn't know if they would be open to it.

Thankfully, they were. And it's taken us a little bit of time to get here, but we finally got them on, had an amazing conversation with them. We have Victor and Libby Boyce, the parents of Cameron Boyce. If you are unaware, Cameron was an amazing child actor, started on Disney Channel. Just worked a lot, never stopped working, to be honest. I did grownups too with him. He was in the descendants. Jesse?

Jesse. Is that the Disney show? Yeah. He never stopped working. He was in everything. And best known for who he was as a person. And unfortunately in 2019, he passed away in the middle of the night. From epilepsy.

From epilepsy. Yeah. And specifically from Sudep. Yes. Sudden unexpected death in epilepsy patients. Yes. He started. experiencing his first seizure in 2017, I believe.

And he had, you know, just a handful of them, about five. And only about one, two max a year. And unfortunately, the fifth one took his life. But the outpour of love from people that knew him, people that didn't know him, was just truly unbelievable to witness and really just goes to show who he was as a person and the impact he had on so many lives. And we are just so thankful to have Victor and Libby with us today to talk about Cameron and his legacy because what he did just as a person and what they are doing through the Cameron Boyce Foundation

is just so beautiful and he is still changing so many lives, saving lives today. So yeah, I think without further ado, we can just jump right in. Thank you, Victor and Libby, for being here with us today. And thank you for sharing Cameron's story. Thank you so much for being here with us today. We're so truly so excited to have you guys. The same can't be said about the circumstance, which we're deeply sorry for.

But we just feel so honored that you guys felt safe enough to come here and talk about your son and his legacy and all the positive and beautiful things that has come from his life. So we just, we feel really, really honored. And just thank you for that. Thank you for having us, of course. I mean, I would just, I would like to dive, like, right into, you know, who Cameron was. And his story, because obviously, you know, we know his story. Him and Taylor did a movie together. Grownups too.

Quite some time ago. But we know his story, but for our audience listening, I'd love for you guys just to kind of share, you know, who he was as a person and his story. Well, he was just a special kid who was very, very interested in dance. very early. We didn't even know about it. It was like a big surprise to us. We went to pick him up at daycare and they said, come see our dance recital. So we came, whatever, preschool daycare. He was little. He was like four or five. And we had no idea they were even doing dance and they did a little performance. And it was the camera show and all the kids stood around picking their nose and like watching camera names. And we were just kind of blown away and just saw his pure joy. of performing and like leading and just he was just on fire like wow like just natural you know and so we just decided to take him to dance lessons wow and we took him to a dance place in north

hollywood millennium which a lot a lot of dancers come from millennium and he got right into the kids company there and and that's where it sort of all started but you know cameron was a kid who watched the world a lot he was very very observant we used to worry about about him a little bit because it was like, he's not participating. He just watches what is going on. But he was so intent in that. And he like didn't participate until he could be at 100%. We observed this with him. But because he was a millennium and there were a lot of kids there that were doing some acting and he wanted to try it. And we thought, we'll try it. And there he went, really. It took off very, very quickly. He never had an acting class ever. He just had a true joy

of life, of performing, of his craft. He was really, especially the year or two before he passed away, just really interested in his craft and building off of everything he had learned, but also stuff that was innate in him, including a choreographing dance. And he was really getting into the craft of performing in a different way, I think, than I've seen a lot of other, you know, young actors come up. And he's just an incredible human.

Like, I don't know even how it's, you can't, unless you meet him, it's hard to, but a lot of people who haven't met him get it too. It's a weird, you know, he was just a very special person. He was a very, very old, old soul. If you believe in that, the conversations I had with him, I often felt like I was his student. I mean, it was weird.

I can't really describe that. And I don't know, Vic, I'm sure you have. ad. No, you said it perfectly. He just came out that way. Yeah. Yeah. You know, people say, what did you guys do? How did you get? We didn't do anything. We just fed him and read to him and sang and danced with him and loved him. And then he just created his own path. Yeah. Wow. I feel like it's so evident. Do you like saying those things about him? Like, be just watching, you know, movies and shows that he's done and seeing interviews with him. That's how I would have described him, but I don't even like know him personally, you know. So that's, that's so cool that

was able to shine through it through his work and through interviews. Yeah. There clearly was something so special in moving about him because, I mean, just from our point of view and from, you know, most people's point of view, the overwhelming love from so many people towards him just was like, you know, I didn't know him very well, but like it made me emotional. Just like the outpouring of love and positivity towards one person was just like really moving. Yeah. And I know he himself, you know, came out like that and was special, but clearly you guys did something right. I'd like to think so a little bit. Take a little, Chris.

Yeah, take a little. He was truly just kind of extraordinary. And a lot of fans say what you're saying. Like they didn't know him personally, but somehow something came through that touched their heart in a way that, you know, it's just, it's kind of like not being the most spiritual person in the world. It's a big question mark for me. Like, what is that?

What is that thing that he had? Yeah. I think also like a lot of people that worked with him like you and, other people, they felt like he was, or they knew right away that he was genuine in a world where most people were being very pretentious or putting on a face or trying to do what people think they should do. But Cameron was just Cameron. Yeah.

Whether he was on stage or on set or not, you always got the same human. And so he was predictable in that way. And then you really got to know him for real, not the persona of whatever character he happened to be playing at the time. Yeah. And when we first started doing TV, like he started with print ads. We did a lot of print. I said, we.

I was dad a journey. Yeah. And driver. So I had the same thing. So, you know, people started telling me. And when I say people, I mean, people like from crafty and from the grips. And they said, you know, your kid is different from some of the other kids. And I thought, oh, no, like, what did he do?

No, no, no. He's really, he's really nice. And he's really pays attention. he takes direction. And I'm like, first I thought they were just like, you know, blown smoke. But it kept happening. And all different people from different areas of the of the shoots and the jobs he would do. Would tell me how not special, but like, like he was different.

And he was like so nice and like how different that was. Like, really? And I didn't buy it for a long time. It took me like a year or more to really start believing it. And then I said, wow, I guess there's something to this. Well, we also saw a lot of other young actors and could compare a little. We had some good examples of what to do or not to do. Yeah.

You know, not calling anybody out. But, you know, it's stressful as a kid to be not in school, to be put into a situation where you think you're supposed to be a star. Like, even Cameron told me one time he didn't understand his level of fame when he was like eight. Like, how was he supposed to deal with that? So it's stressful for a kid, but he was always one to take it in stride and not let it define him so much. Yeah. As we found some other kids did. So I think that also shown through a lot.

He also was really uncomfortable with the fame, I guess, for a while. And I know there was one point at which I was with him and we ran into Corbyn. It was Corbyn. Corbyn. Yeah, it was Corbyn. And I shared with Corbyn that Cameron was having a hard time with that. And I don't know, Corbyn took him aside. And after that moment, he was fine.

Well, what Corbyn told him basically was that, you know, your fans grow up with you. And you will have the same fans from when you were eight to forever. But they will grow up with you. So you guys are kind of all in the same space. And he added more, too. I forget exactly what it was. But whatever he said after that, it really clicked with Cameron. And he just was just like at ease after that.

Wow. Yeah, Corby's a good dude. And obviously he's gone through it. And he knew. I'm grateful for that moment, actually. Totally. Totally. Yeah.

That really helped us out a lot. The other thing that was a struggle for Cameron, not so much for him, but for our daughter, Maya, because Cameron had so much attention on him all the time. It was stressful on her being Cameron's sister. But literally the same story. Yeah, that was really hard on us because we didn't really know how to deal with that, you know. And I remember Maya had a total meltdown one time. Everything's about Cameron.

And Cameron, in his infinite wisdom, he talked to her and, got her through that mess. Yeah. And he was the best big brother ever. The best. He was so supportive of her. And, you know, like we said, he's wise beyond his years, even as a young person. And he knew what to say to Maya to get her feeling safe and feeling seen and being her own person.

And from that time, she decided to stop trying to like, Putin didn't try to be Cameron, but she was thinking she needed to go in his shoes. Right. to go her own direction. Yep. And she did. And we're so proud of her. And it's something that, you know,

even though Cameron has gone, it's something that another legacy that he left. Yeah. It's his sister. For sure. For sure. How far apart are they in age? Two years, seven months.

Okay. Two and a half years. Okay. Yeah. Yeah. I just have a sister too, a little sister. Yeah. Same thing.

Yeah. Same thing for sure. Yeah. Yeah. But she's a powerhouse. So she's Maya. So is Maya. Yeah.

Got that gone. She's fully baked now. She's fully baked now. It's no worries. So something, as you guys know, that has been a huge part of my mental health journey, Taylor's mental health journey journeys as individuals. And as a couple has been therapy. Amen.

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That's C-E-R-E-B-R-A-L.com slash podcast and use code the squeeze. Offer is only valid on monthly plans. Other exclusions may apply. See site for details. Get going on that therapy. There was definitely a time where it was like, what are we going to do? Because I didn't see an end to it. Because he kept getting bigger and bigger and bigger.

You know, he just kept booking and booking and print led to commercials. Commercials led to TV. Movies. Actually, wrong. Commercials led to movies. He did movies first. Then he did TV. And it just kept going.

And, you know, we didn't want him to stop. And I would always ask him, are you sure you want to do that? this because a lot of kids get pushed by the president. I'm not an actor or I can't dance my way out of a paper bag. And so neither one of those things are like, I'm living vicariously through him on those things. And so I would always ask him, do you still want to do this? Are you sure?

Are you sure? And he kept saying yes, yes, yes, yes, yes, from six years old to forever. Wow. So I didn't want to pull him out of it because of my. So we had to figure out something and Cameron just handled it. Yeah. That balance is tricking. Super hard.

Dad would have liked him to be a cyclist. So truly, we were not interested in him being an actor or dancer. Any of those things, but it was his joy. I tried to get him to ride with me, and he hated the tight clothes. He would not. And he was actually a good little writer, but that just wasn't his thing. I'm with Cameron on that one. You got to be able to pull it off.

You got to be able to pull it off. You know, it took me a minute as a dad to realize he is not mini me. Because you think your son, you know, for example, I was big time into Hot Wheels when I was little. Hot Wheels everywhere, the tracks, cars, all about that. So naturally I get Cameron Hot Wheels, Hot Wheels. So all he would ever do with them, he wouldn't drive them as cars. He would just arrange them in color order. Like, that was what he did.

Just creative. So I didn't get, like, what are you doing? Those are cars. So long story short, he's an artist. He wasn't a car guy. He liked his car that he had. But he wasn't like me like as a kid. Like I was all about that.

Yeah. And he wasn't about that at all. You guys both had basketball. We had commonalities, music, and basketball. Okay. But other than that, Cameron, you know, like I said, he was a dancer. I was never a dancer. I never wanted to be an actor.

In fact, I didn't want him to be an actor because I grew up with a couple of child stars that I also won't mention that they went really, really wrong. Yeah. So I was trepidacious as hell for sure. Yeah. Getting him into that world. And it was like, oh my God, do we have to? Yeah.

No, and I hear you. But it worked out, but it was not for me. It doesn't work out for most. I never ever envisioned this as my life, just like I never envisioned this epilepsy thing as my life. You never know what's going to happen in your life. So you just can't be completely surprised because things can be kind of random. You can plan and plan all you want, but then something can derail you or a newer opportunity you can come either way.

Yeah. So when Cameron really started booking, I couldn't believe it. Like, really? Yeah. Because it took a long time before he booked this first job. Yeah. All I was doing was taking time off of work and getting parking tickets. Go into auditions and the meter

runs out and they're like, oh God, I'm not $60 for nothing. I don't know that it took a long time comparison to other people. Well, I don't know. Six months. For me, that was an eternity. Yeah. For him. Right. Right. And what do we doing this for. Plus, I didn't know what I was doing. So the first audition, I'll never forget, we park, we go in, we find the place, we check in, we signed a little thing. He went behind a

curtain. At first I thought I was supposed to go with him. Oh, no, no, no. You know, I'm walking behind like, duh, you don't do that. So he goes in and he came right back out. And I'm like, what happened? You know, whatever it was. I don't know. He's like, I don't know. Yeah. I'm like, what is going on? And then leave and that that just kept happening. And then finally, he booked a Disney print ad for a calendar. It was a Christmas calendar. Okay. No, no.

It was Halloween because he was wearing a Halloween costume. I still have the catalog. And he had so much fun. And one kid kind of was not cooperating. So he took that kid's part as well. So he did double work. And they were jumping on this little tramp, it was almost the size of this table,

little trampoline. They gave him the trampoline. And he got like, I want to say it was like, $1,200, which I thought, oh my God. Yeah. This is amazing. Yeah. So, and he loved it.

And so that day on, he just kept going. He never stopped. He never stopped. So that's why I always ask him, you know, do you still want to do this? And he kept saying, yes, yes, yes. I'll never forget another time. We were on the freeway. And it was a lot of traffic.

We were going somewhere for another print ad. And Cameron said, dad, where are all these people going? Because we were stuck in traffic. I said, well, they're going to work. And he said, I'm glad we don't have to go to work as we're going to a job. I just thought, this is amazing because he is going to work. Yeah. But he loves what he does.

That's perfect. That's the goal of every human to love what you do. Oh, my gosh. And to not stress it. Then you won't work a day in your life. You don't work a day in your life. And I'll never forget that. Yeah.

That was amazing. Wow. It's our fun. Yeah. Oh, it was great. I'm glad we're not going to work. And that shoot was very fun. They had a pillow fight.

I forgot what the product was, but they were fighting with pillows, those kids. It was like abacromby. I don't know, whatever it was. Yeah. But he had a blast. And it was great. He had fun at work. He had fun at work all the time.

He always had fun at work. Yep. Yeah. Jumping forward here, when did the epilepsy come into the picture? When was the first time that that, was introduced or when was he diagnosed? Well, he had his first seizure January 1st, 2016 or 17. Okay.

I think he was 16 or 17. I don't remember anymore. But yeah, he had a sleepover with a couple of his friends and they came running into our room at about 6 a.m. saying that Cameron was spitting up blood when in actuality he was just biting his mouth. And, you know, he was completely out of it when we went in. just like really didn't know who he was, where he was, nothing. He was just kind of vacant. Of course, we called 911. They came. They always have to check for child abuse. So they removed

him from us. What's going on? And then they said, okay, who wants to take an ambulance ride? Vic jumped in and they went to the hospital. And we were told that he had a seizure. And they told us that you can always have one free seizure, which actually, you know, like we've been living in this for a long time now. And that's like not the best information to give, you know. But it's really like the time when you have a second seizure, you're considered as having epilepsy and they start to treat you. Yeah, second seizure.

A year later. It was like 13 months later. Oh, wow. So when the person that told us he could have, it's possible that you have one free one, meaning you'll never have another one. After a few months, I thought that was the case. And we literally, I did, I can't speak for her, but I literally kind of forgot about it. You know, everything's going on.

We're still doing our thing. Everything's normal. And then he had another one. And then that's when it got super duper serious. You're diagnosed as epileptic. And now we need a plan. We need to find meds. We need to get information treatment.

And this is our whole spiel. frustration with the medical system. At this point, we're still not getting a whole lot of information tools. Very little. We're getting some. We've got a brochure. But nothing substantial, nothing significant as far as how intrusive and invasive epilepsy is on your life now. Because it's, for a lot of people, it's a daily occurrence.

People see every day, multiple times a day. multiple times. There's many, many different types of epilepsy. We think there's 40-ish. Yeah. And so it's super complicated.

And for a lot of people, it's just super debilitating. Cameron was different in the sense that he only had a seizure about every year. And so because he had so few seizures, it's kind of hard to pinpoint what's working and what's not.

We got his brain scanned. He wore an apparatus on this. We went to a Rams game. with a whole bunch of wires all over his head and a box on the side. We covered, put a beanie on his head and covered up the box and went to a Rams game like that.

Because Cameron just wanted to keep living his life. He wasn't going to sit around just because he was having seizures, but we were trying to figure it out. But nothing was ever conclusive. Nothing was ever definitive as far as causation. They tried to induce seizures. A lot of people seized because of flashing lights.

That's one thing. That's a trigger. It didn't work for him. Okay. There was no spot or spec or any kind of thing in his cat scan and his brain. So it was really, really difficult. So they put him on a medicine that's very common epileptic anti-convulsion medicine. And so, you know, we're not sure if that's working or not, but then another year goes by.

And the thing about these medicines, that you have to take them regularly. And when you're a young person and you're out doing your thing, you may or may not do that. You may or may not get enough sleep. You may or may not smoke a joint. You may or may not have a drink. So these things are all complications and trying to do what's right and figure it out. Epilepsy is a type of condition that they know the least about. Like it's the most common neurological disease, but they don't know that much about it when you really think about it because there's so many different types.

Yeah. And I think for us, like our big message is about, you know, taking that diagnosis very seriously. And if the medical community doesn't tell you it's serious, you need to know it is. And not to spook people, but like everything that Cameron had in terms of his epilepsy were actually things that we thought were positive, which were actually negative. And what I mean by that is that I thought because he had them in his sleep that he was safe. Right. But actually having them in your sleep is more common associated.

with people dying from a seizure. With Sudden, unexpected death and epilepsy patients is what he died of, which is no, there's no ideology, there's no understanding of why. But, you know, how I feel about it is that he had a very bad seizure and his body just didn't breathe or his heart stopped or something like that. But like all of, there's so much stuff that we didn't know before he died. There was so much knowledge. Including the existence of Sudap.

We never heard of that. We never heard of it. We had never heard of it. The medical community could have armed us better. You know, like there's a balance between freaking a parent out and just giving them tools, right? And we didn't get those tools. And so the Cameron Boyce Foundation, that's really what we're all about is awareness. And, you know, speaking of his legacy, I know, even as hard as it is and just every day, like, why?

this kid die. I know that people are saved because of him. And no, it doesn't, it doesn't make it better. It doesn't heal me. No. But it does make me feel as though at least something good came of it. Yeah. Well, Cameron was always giving of his time, especially for sick kids.

We used to visit sick kids in the hospital and like we would be scheduled to see five or, you know, like a handful. And he would go to every room on the floor without a doubt. And just, and, you know, I think Cameron, even after his, after his diagnosis, he was doing this. So he wasn't feeling sorry for himself and what was me. He was still going out because he knew the power that he had as far as affecting people in a positive way. Yeah. He really, really understood that. And that was something always fascinated me because I'm not sure I would understand that at his age, even as a teenager.

So he was just a giving, giving guy. Yeah. And like even like silly things like he was in a basketball league for like, you know, Disney kids. And it wasn't like big time stars, but those people that were on TV and stuff. Yeah. It was called Hollywood Nights. It folded after the pandemic. But after the game, Cameron would take off his jersey and throw it into the crowd.

And I'm like, no, I want that jersey. But he didn't care about me. He liked to give it to his fans and give it to the people that appreciate him. And he didn't care about keeping it. Like, that's something I'd have framed. And, you know, he was so different from I am as far as material things. He wasn't materialistic like at all. And that was another thing I didn't get like, why did you just throw that away?

He didn't care. The joy was in sharing it with his fans. And that's why I think people love him so much because he was just so giving. Yeah. He would always take a picture. He would always talk to you. He never said no. Yeah.

Yeah, well, another example was there were times. Obviously, he talked to kids with special needs. And he just took so much time with them. Like, I remember one time there was a kid with autism and he kept running away. And he was just hiding, hiding, hiding, hiding during an event and wouldn't talk to Cameron. And, you know, Cameron dropped everything and went to him and found a way to sit there with him for an hour and just chat. It was like, okay. Or he would say, like, somebody would say, hey, Cameron, can I please take a picture with you?

And he would say, no, but can I take a picture with you? Oh, my gosh. Like, they were just freak out. Like, yeah. Oh, my gosh. Yeah. That's so sweet. Yeah.

You guys touched on it. But you started the Cameron Boyce Foundation. I think you've, you know, kind of explained. But what is your main mission behind that? Yeah. Right now. this moment, it's awareness. We started with a big mission

and we've sort of narrowed in. Reason for that is that it just quickly came to our heads that, you know, we needed to focus on epilepsy. And then, you know, we were focused on epilepsy awareness and research, which we're still, you know, we still donate to research, but there's so many entities out there doing that.

But our foundation, what we have is eyes and young eyes, which is really where the issue is, A lot of young people get epilepsy and they're going, they're becoming hormonal and they're going to college and they're, you know, and that's when it gets risky. Yeah. Especially for young men. Really? It's worse for boys. Cameron had all the typical markers of somebody who was susceptible.

So what are those if you don't mind me asking? You don't even fair, but. No, that's fine. Young men dealing with a lot like your first year of college, for example. It's stressful. You just moved out of the house for Cameron. he was transitioning from being a Disney actor to an actor that he wanted to, you know, mainstream.

Because what he learned after Gamer's Guy got canceled, that show was not good, I'll just say it. Gamer's guy got canceled. And after that camera, it was the first time he struggled to book. So when I said he always booked, I was not early on he did. But after Gamer's Guide,

he was out there in the non-Disney world. And it was a little struggle for him. but I knew he would still break through. Yeah. So he had to not reinvent himself, but like he was on a whole different kind of mission. Yeah. Because he could see that like these castes,

he didn't know these casting agents. It wasn't the same people he was used to. Wasn't the same actors. He would go into the room and people didn't know or care, you know, because they didn't take Disney actors seriously. It's like you have real actors, quotes, or in Disney actors and they're not the same.

So he had to go through that little rough patch to start again. And then just like in Cameron fashion, once he started booking, it was the same thing. He booked a pilot. He booked this. He booked this TV show.

He booked this TV show. He booked the HBO show all the way up until the end until a movie. So he basically reinvented himself. And that's when my wife was saying. He was so entrenched in his craft at that point. Because he realized, if I'm really going to do this,

I have to go serious. Yeah. Serious. Because, you know, with grownups and stuff, that's stuff was silly and fun, but he wanted to be taken seriously as an actor. And that's why he, it's a high stress thing. Yeah.

So that's another marker. Yeah. Young, male, stress. Sleep during your sleep, having seizures during your sleep. In your sleep. Yep. Yep.

Just think all things we didn't know. He never had a seizure during the day or driving or anything like our sleep. We used to worry, like, if he's swimming, what if he, you know, anything like that. It was never, it was ever. They all were during his sleep. Every single one. Every single one while he was sleeping. And again, we were lulled to sleep, you know, so to say, so to speak, thinking he was safer because he wasn't driving.

Right. Or because he wasn't swimming or are walking downstairs or something. But that's really bad because when you're sleeping and you sees it's, that's a chance for suit up. Okay. It's for some reason. And we don't understand it. We don't know why. There's no, one of the researchers that we did a grant for or granted money to is working on trying to figure out that causation, that correlation, I should say.

It's circadian rhythms. You know, everything in your body has a clock, not just your brain. Every organ in your body has a clock, which is something we learn. And if those things aren't timed outright, you could have serious problems. So her theory is that maybe because the seizure is not what kills you. It's something after the seizure that kills you. Your system gets switched around. Things are wired wrong for a second.

And so she's trying to figure out that whatever is causing that. But that's just one theory out of who knows how many. There's many brilliant minds working on this. But it's so complex. And there's so many different types of epilepsy. Like which one do you focus on? Where do you start? Are they connected even?

Yeah. Because like Cameron, we said Cameron had five, maybe six years. We don't even really know it was five or six, but it was only a handful. Okay. And people we know had kids that seized five, ten times a day. Sheesh. It's horrible. And but they're very debilitated and they're learning disabled and stuff like that.

So Cameron was exceptional in the sense that he was brilliant. He was a great actor. He was a great dancer. he was a great athlete. He could dance like crazy. He was so coordinated. And Cameron had scoliosis. Cameron was not even straight.

And he could do flips and all this stuff. And so he was exceptional in that sense. But we know there's other people, like there's pro sports players that have episodes. We need people to come out of the shadows. Start talking about it. Yeah. That's kind of our main thing.

We need people to come out and speak on it so that we get more eyeballs on it like Parkinson's has, like cancer has. And Cameron's not the only person. No. One in 26 will have epilepsy in their lifetime. So they're out there. People don't talk about it.

And it's always been, since the beginning of time, it's always been a stigmatized condition. And not talked about. And it just continues. So for us, it's like, he is the biggest name in the epilepsy world who's come out, you know, not voluntarily. But obviously, you know, we are carrying his legacy. and for us, we know this is what he would want us to do. There's definitely some people with a much bigger name recognition than Cameron that have epilepsy. So we would like, I mean, we do know of some, but they're just not particularly vocal about it, you know.

Yeah. And it's understandable. You know, everybody wants to talk about their personal journey, but, you know, it will be helpful if more did. Yeah. And I'll just say, like, I think part of us being lulled was like, for me, I work in homelessness in LA County, and I would read medical records and see so many people who were dealing with who have substance use have seizure disorder. I hear so many people who have multiple seizures a day, like Cameron having one a year,

he's safe. Yeah. He's safe. What do you mean? They're fine. If they have them. So there's so much around proper education and proper understanding of the disease. And hey, listen, they don't know everything.

That's true. But you have to give people more tools. Yeah. And that we just didn't get. I remember thinking, you know, he only has once, one a year, just about like after the third one maybe. And I thought, man, it's going to be an issue in his life for sure. But we can manage this. Yeah.

Yeah. So again, you know, the urgency wasn't really there. No, no. And that, in retrospect, was. really not. Yeah, well, totally understandable. Obviously. Yeah.

I personally don't know anyone with epilepsy, but I know I've worked as a nurse and I definitely have seen like patients with it. But that's just crazy, like learning all of this from you guys and how like little like awareness there is about it. So I mean, I'm thankful for, you know, the work that you guys are doing through this. I know that you guys have impacted, you know, a lot of people and your work is definitely, you know, helping spread awareness and saving lives. and that's just, you know.

We hope so. We appreciate that. That's just awesome. I do want to ask you guys about your grieving process. I know that's not a fun topic, but, you know, we love talking about it because, you know, there isn't a playbook for it. And everyone's story is so unique and so different. And I think hearing other people's stories, there's always something that we can take away from it.

What were those first few months like for you guys after the passing of Cameron and how has that, you know, changed at all sitting here today? Yeah. How is it evolved? I think we have very different ways of grieving. We do. We do. But the first month, two, three, six were, it was almost like I left my body. Yeah.

It was like, I said it once before, and I still kind of feels this. I kept waiting to wake up from a nightmare. Yeah. Like I just wouldn't accept that it was real. and, you know, there's no describing it. And people will say, well, I just can't imagine how you feel. And I say, don't. You don't want to feel this.

You don't want to imagine this. It's just like, why would you want to imagine that? Don't even think that. But I know, you know, for Lib, she's involved with many support groups, multiple support groups. Too many. And it works for it. The first thing we did was we went and we saw it was a therapist. Yeah, therapist.

And it was like for me, it was like, it did nothing for me. It just made me more sad. Like, why am I telling the stranger? I don't know. She's going to charge me money. And what, what are we doing here? Yeah. And I was just mad and it just was not helpful.

Yeah. But, you know, luckily, you know, Lib is connected with some really tight groups. And everybody has like, they're. tragedy is just as big as ours. The only difference is most of them weren't famous. So, you know, our thing is not unique. You know, parents lose kids, people lose loved ones all the time. I don't feel sorry for myself in that sense.

But we're unique in the sense that our son was so visible that people that we don't know constantly are coming at us, you know, with condolences and things and asking us questions and stuff. Still. Still. years later. Yeah. And it's, you know, it's, it's, it's always well-intentioned, but it's not always wanted.

Yeah. Because it's overwhelming. It's constant, constant, oh, oh, oh. And I don't want to live my life like that. I don't want to live in constant sadness. And Cameron wouldn't want me to live my life in constant sadness. Yeah. So it's really, you know, I don't want to feel guilty for enjoying my life.

And sometimes that's what it's like, like, you know, I've had people say, well, how can you go on? What the, what? What are you supposed to? What? You have to. Should I just crawl up and die? Like, no.

Now we have this mission to turn this tragedy into something positive. So that's what the Cameron Voice Foundation is all about. And as far as everything else, like, I'm still the same person. Obviously, I'm changed in the sense that we've suffered a tremendous loss. But what I've learned is you can. suffer a tremendous loss and still do things. You could still do something. You could do something about it.

You can not just wither away. Actually, I would add that I think you actually begin to live your life more intentional. Oh, yeah. Oh, yeah. No doubt. I mean, COVID might have helped this quite a bit. Me and him were stuck together for, what, three years?

I don't know, whatever it was. Like, we had to, you know, we're very different people. But yet we've had. we've had to pull together and I think our relationship is stronger in a lot of ways. But I'll just say, you know, my experience is very different than Vicks. For me, because at my work, I'm a problem solver. My whole life is like solving problems. Give me a problem.

I solve it. And so when this happened, this is not solvable. And I kept trying to use my usual coping skills to solve this problem. and it was kind of like, okay, how long am I going to feel this way? Like literally, and it's kind of like when you read about Elizabeth Pugler-Ross and grief and there's this bargaining, I was bargaining like crazy those first, you know, maybe six months to a year, just, okay, how do I get out of this? What's the solution?

And, you know, then the second year is like, oh, shit, there is no solution. There's no solution. There's no solution. There is nothing. You can go to a therapist. You can go to a support group. You can distract yourself. That's what I did a lot of. Distract yourself.

You can do all these things, but there is no solving this problem. And you just kind of like have to make a decision. Number one, I know my son very, very well. I know exactly what he would want me to do. I know that he would want us to continue living. I know that he would want us to take care of Maya. I know that he would want us to be good. I know he'd want us to embrace our family.

I know all these things. So even though he's not here in body, like I know his heart and his heart came from us. So we just continue in that vein. We also know that he would be very proud of what we've done. Totally. Like the last. He'd be blown away. The last.

Especially at him. Backhanded compliment. Our last gala was just tremendous. And it was only our second one. And we hope and feel that it will continue to grow and get. But I think all the people that came and they all came for him. They all came for him. And it was just so much love and so much support.

And just like, deservedly so for Cameron. And so I think he will be proud of that. as well for sure. He'd be proud of his best friends, too. Oh, yeah. Oh, yeah. Who've really done a lot for. Super involved.

Super involved. Super dedicated. Wow. Literally ride or die. Like. Karin and Sophia. Yeah. Just unbelievable.

And their families as well. So we've been blessed with a strong village, as my wife likes to say. Yeah. And, you know, you need that. And that's, you know, you really. asking about the grief thing, like for her, support groups. For me, it's my, it's my buddies, my cycling crew. Yeah. Yeah. As it is. And because it's, it's both a physical thing and also a support thing. Yeah. And just as an example, yesterday, we had a right, we did a ride out of Malibu.

And one of the guys who was a dentist who does very well for himself, he has a house here, and he has a house in Idaho. And apparently people are asking him, why don't you, just move to Idaho. And he told us, he said, we all just were sitting around. We had lunch after a ride. And he said, you know, people keep asking him to move to Idaho. He says, the only reason I don't move to Idaho is because of you guys.

And he was like getting joked up. I was like, wow. But that's the kind of relationship that we have in this group. You know, it's very tight-knit. And it's something that's been evolving kind of organically over the last 20-ish years. and the core group that we have now. It's like we all know that this is our support group. Yeah.

Constantly, we talk about everything. Yes, I know. He's talking about me. Yeah, they talk about their wives and how we frustrate that. Oh, my gosh. For real. We talk about everything and it's good. I'm glad.

Get it out. Get it out, baby. It's weird for me because I wasn't the type of person to tell things like to talk about personal things. Never. I was never that guy. And, you know, more and more and more, because we can be vulnerable, it's a rare thing with men. And, you know, men tend to be clammed up. Men tend to be solo.

And men die earlier than women because of these things, because they don't have support, because they don't talk, because they keep their feelings modeled up. And we just let that shit out. Yeah. Which is great. And so you combine that with a physical fun and joy of the cycling. Yeah. It's the best support group ever. So I never feel like I need to go to the one she goes to even though I'm sure those are great too.

Yeah. But it would be like for me, it would be a start over. I would have to reset and re-meet. They're different kind of people. The thing that's good for me with my guys is we have one thing in common because they're all different, you know, career-wise, even age-wise. We have kind of a big age spread, like the youngest guy is still in his 40s. And the oldest guy is like 70.

Okay. So, you know, we have kind of a big age spread, but the commonality is the cycling. Yeah. And it's like, you know, golf on wheels. You know, golf course is kind of the same thing. People do deals on the golf course. They make friends in the golf course, blah, blah, blah. But the cycling thing for me is, is been, it's just life changing.

Yeah. You know, I was already into it as a solo person. Like, I think I would always have a bicycle, but to have these people is much more important than the bike. Yeah. Is the bike is just the thing that brought us together. I'll say one other thing, which is that we also have two rescue dogs. And like, we are those crazy dog people now. Speak for yourself.

No, he's crazy. You're sitting across them too. We are nuts with it. So we didn't have dogs for a long time. And I kept bugging, bugging, bugging. I kept saying no. I kept saying no. And now I'm like, every dog I see, I'm like, can I pitch your dog?

Oh, my God. Dog, dog. So they're just joyful. They take me on a walk every day, two miles. You know, they're just, they're just everything. The power of animals. Oh, my God. Yeah.

I never, I've had dogs my whole life. I never felt like this. I've always liked dogs. But now it's different. There's something different about these dogs right now. And it's a, wow, it's a powerful thing. It's healing. Yeah.

It's a powerful thing. Yeah. That is and also that I'd love that you both like said community because I feel like that's something that we've learned. I think a lot of people have learned since. it's COVID especially how important community is, you know, for the big things, small things, the heart things, fun things, yeah. I mean, I, you know, he has this cycling group.

I have amazing friends. I also have like a BFF who's just, you know, she's my, she's, you know, she's always there for me. And I have a number of really, really good friends. So we do have a good village. Yeah. And some together and some not. Yeah.

Yeah. We're fine. We're very, we're very individual. Even better. Like, we just. just took a trip to the Netherlands with five couples that all just happened to be some of my cycling group. And she gets along with the wives. And of course, I love the guys.

And we had a great time. And we rode our bikes through home. We rode flat for her. No mountains. We went to the flattest place on Earth. Amsterdam. Yeah. Yeah.

It was super flat. It was beautiful. And she had an e-bikes. It was all good. But even more fun than the cycling was just having those. people and enjoying good dinners and just enjoying good times. And, you know, again, I wasn't really like that so much growing up, you know, kind of been like, eh, I'll just go my own way. Yeah. But, you know, the older I get, the more I realize how important those relationships are.

And I really appreciate it because, I mean, besides your health, yeah, material things don't really matter. It's just your health and your relationships and everything else will follow. Yeah. You touched quickly on his friends and, I mean, his legacy has changed so many people's lives. And I'm just, I'm curious from your point of view, what has it looked like from what have you like, have you learned anything? Maybe that you didn't know about Cameron from these amazing friends that he has, you know, coming forward with stories. and just what what does the outpour of love from people that knew him and didn't know him? What has that felt like for you guys?

For me, it was just a reinforcement what we, for me, what I already knew. But I'll say, you know, not so much. Like I did. What I think sort of touched me is just how in every community that he was within, Yeah. He was an anchor somehow. Like he was sort of the one that everyone depended on. Yeah.

For sanity, for reason, for fun, for all of those things. And like I saw that because in our family he was like that. I mean, for our family, he was when, you know, the party started when Cameron walked in the door. Okay. I'll say this too. Nothing new surprised me. I didn't learn anything new was your question. But to her point about she said sanity, I thought Cameron was almost too, like, people want to tell them all his, tell him their problems and like how, wanted him to fix.

Like, he was their therapist. Yeah. And I just thought it was too much sometimes. Like, you don't have to be there like that much. Yeah. You know, because that's, that's sapping your energy. Yeah. It was just, it was almost giving to a fault.

which I didn't really like sometimes, but like I said, that's just who he was. Yeah, you can't help that. And that's me. And that's me because like I'm... Even you will say, okay, I'm done with this person. Well, because I'm 61 years old. Even you will say, okay, that's enough.

But Cameron would never say, no, he would never say, okay. Even though... We had to play bad cop a lot. Yeah. Yeah, yeah, yeah. Yeah. So that's one thing. I think also his friends,

if there was something that we didn't, No, I think his friends would protect him. They would protect whatever that is. And just maybe if they feel like they're protecting us or, but I think that's what would happen. It is really, really close friends. Yeah. Yeah.

Well, last question I have for you guys, talking to someone who has lost, you know, a child, a parent, a family member can be hard for the person, you know, talking to you. And I feel like sometimes when I talk to like a friend, you know, that maybe like lost their mom. mom or something, I, like, almost get awkward. Like, I almost don't know what exactly. Scared what to say, how to handle it.

Yeah. I was going to say, like, the people always say, like, time heals all wounds, but that we know that's obviously, like, not true. Don't say it. How, like, how do you, yeah, don't say that. How, like, how would, how would you want to be talked to if that's the correct verbiage of how to say that? Yeah.

Like, what is, what is the correct thing to say to someone that, like, shows empathy and that you care for them? isn't, you know, triggering or bringing up stuff. I think it depends on who it is. Like, how close are you to them? Yeah. You know, because strangers say things to me sometimes. And I, like I said, I know their intentions are good.

But they say awkward things. So, so for me, I've learned to just like, just take it in stride. They don't, they don't mean anything bad or anything and just be nice and just reflect niceness back to them. Yeah. Because there is no one thing. it depends on your relationship for me. I'm not speaking for her,

but for me it depends on who's saying it. You know, I had a situation where someone who should have known better that we know very tightly said something super awkward, like early on. And I just was like livid. Yeah. Like what did you just say to me?

And then so I let that person know how I felt about that and why. And the very next day, they did it again. And I just couldn't. But it was only because that's what that person would normally say. It was like a daily thing. It was a mindless thing. It wasn't like they were giving it thought what they were saying.

It was like one of those things that they just say. Yeah. So I took a learning lesson from that to not get upset because, like, again, I know that it wasn't malicious or flippant at all. It was just they're out a lot. as to what to say. And they just said something that rubbed me the wrong way. Yeah. So I think for me, I just had to learn to not get offended or upset no matter what anybody says.

So because there's really no right thing to say. Yeah. There's really no right thing to say. There's wrong things to say. But again, as long as it's not malicious, I'm not going to get upset about it. I actually would love to, if I had time to write a book about this. Yeah. Yeah.

Because, yeah, a lot of what Vic said. it's really just about actions more than anything. Like there's nothing you can say. What can you say? Right. I mean, probably the most sane thing I heard was no words. Of course, people just hugged me. Like, that's, and I took major lessons from that,

a very good friend of mine, just, she's a physician, and she just helped her dad pass with, he had a terminal illness. And, you know, I just went into her home Friday, and just, she fell in, into me and we just hugged. That's all that you need to do. And I still, it's still awkward. It's still awkward. I still feel like some, you know, okay, somebody had a loss. I'm not sure what to say. It was worse before my loss. Like it was really uncomfortable. So I know how people feel. I know it's just not a thing that we're comfortable with at all. And nor, you know, nor should we be in a lot of ways, you know. So it's, it's really hard to know. But.

you kind of have to think about what your relationship is with that person. I mean, I had some weird stuff said to me. We had some weird stuff said to us people who are not close to us. Like, I can forgive you if you're close to me, but if you're not close to me, like, what? What? Like, really? Oh, we had some weird. In some of her support groups, the things that people say to people who have lost their kids, like, oh, well, you have three other kids.

Yeah, we didn't. By the way, that never happened to us. No, no. We've never had anything like that. But people say some really stupid shit. The worst thing that was said to us was this should have been avoidable. Oh, yeah. Oh, yeah.

That's the worst. That's the worst thing. Oh, yeah, yeah, yeah. But I will say, but worse, way worse for people in my support group. Oh, yeah. Just things that are like, what? Like, why? I mean, so you have to think about what you're saying and figure out what's the best way to support this individual. We had a food train. We had people in our house nonstop for two weeks.

We needed that. Being there, distracting, like my best friend who lost her husband a few years before Cameron died, just took my hand and said, we're going to get through this together. And even though, yes, mine was a child, hers was her husband, you know, it's different, but that just really helped me. and for sure we're closer now and we are getting through it together and we do get together very often. She lives up north, but like we get together often and we're there for each other and we could just talk about it. And like my best friends, they're just, you know, the thing about it, I think the biggest message is don't stop talking about that person. Do not. Don't avoid talking about Cameron with us. Okay.

Like that's the worst thing you could do because we like to hear his name. We, like, you know, he's gone physically. And how painful is that as a parent that your child would be forgotten? So not, and I hear this from a lot of parents in my support group. It's that dismissiveness of like not talking about that person, not acknowledging that they're not there. This just, it's kind of like a slap both ways, you know? Yeah. That's good to hear.

Yeah. Well, we all can learn so much from Cameron. and the human that he was. So I would just like to say thank you to both of you for raising such an incredible example for the rest of the world. And thank you for all of the work you're doing with the Cameron Boyce Foundation.

You guys are doing exactly what your son would want you to be doing. And it's just saving lives. Yeah. Thank you. Thank you. Yeah. Thanks. Thank you so much for squeezing us.

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