The Life and Death of Disney's Cameron Boyce | Epilepsy and SUDEP Awareness

Added: 2026-05-10

[00:00:00]What? Morning, Dad.

[00:00:05]>> Whatever.

[00:00:06]>> We love you and thanks for the support.

[00:00:08]>> Parent Protective Services.

[00:00:12]>> You're my >> He's ridiculous.

[00:00:17]>> That's Cameron's way of saying hello.

[00:00:19]>> What's up, y'all? I'm here. Eat some food. Bet y'all doing the same thing.

[00:00:27]>> Oh, we need a passport.

[00:00:31]And I'm Cameron Boyce.

[00:00:40]>> You think you could have had this?

[00:00:45]>> Today we'll be discussing the case of Cameron Boyce. It's July 2019. Cameron had just gotten home after spending the evening at dinner with his family. This was a normal night for him. He texted his dad about the Lakers and he presumably went to bed right afterwards.

[00:00:59]Cameron had just recently moved out of his family home into a house with his two good co-acctors and friends and he was continuing to work on his craft as many of you likely know him by the various movies and TV shows he had starred in over the years. He was doing very well for himself. Not only was he filming different roles and living outside of his family home for the first time, but he had been working on a lot of philanthropic projects as well. But despite his success and from the outside looking in, seemed like everything was going extremely well, what most people didn't know is that Cameron had been dealing with seizures and he was diagnosed with epilepsy. And on that very night of their dinner, he'd experienced his worst seizure yet. So bad, in fact, it was just the next day it was announced to the public that Cameron Boyce had passed away at the age of 20. When news of this broke, not only was the public in shock, but so was Cameron's family. Despite the diagnosis, he was overall healthy, and him unexpectedly passing away at this age was never something doctors had mentioned as a possibility or anything that had even crossed the family's mind.

[00:02:05]But it was after his family did some further investigation when they learned something that was truly unsettling. For all of those years of Cameron being diagnosed with epilepsy, there was one major complication doctors hadn't warned the family about. In fact, it's a complication many doctors have admittedly refused to bring up to patients and a complication some doctors had never even heard of. Sudden unexpected death in epilepsy. Cameron's family would soon learn that this unfortunately is a reality for much more people than you'd think. And even scarier, they would learn that the true amount of these cases is something that historically and even till this day has been under reportported on death certificates. But before we get into this case, just to introduce myself, my name is Pedal Palmer and on this channel I post anything medical mysteries and crime. If that is something that sounds interesting to you, please consider subscribing if you end up liking this video. All right, let's get into this case. Cameron Boyce was born on Friday, May 28th, 1999 in Los Angeles, California. He had a sister named Maya who was 2 years younger as well as parents Victor and Libby. Libby described that growing up Cameron was very effervescent. She described how they used to always say he had pixie dust because of the energy he brought toward others. His dad Victor described how he was like a magnet who just drew happiness. His friends described that he had such an infectious and identifiable laugh. And all of his loved ones described how he was just the life of the party. They said he'd always get everybody dancing and singing with Victor's sister who was Cameron's aunt specifically saying quote the party didn't start until Cameron came in. This energy is something felt not just by his loved ones but also by the fans he would soon have later in his childhood. From young Cameron was described as being very kind and giving. Libby described that he was born a very special person describing quote >> he was very much an old soul. He really understood on a very, you know, intimate and deep level um so many things that were so beyond his years. Um and really really felt very strongly from day one about helping others and kindness and not bullying and you know finding creative outlets. He found >> Cameron was so giving. Victor thought he was sometimes there too much for people, almost as if he was like people's therapists. He stated how Cameron was quote giving to a fault, explaining how saying no wasn't something he typically did, even if it was zapping his energy.

[00:04:45]Cameron was a big fan of basketball, specifically of the Lakers. And later on when he was older at around 18 years old in 2017, he became a team member of a basketball league for Disney stars and other related people on TV called Hollywood Nights Celebrity Basketball.

[00:05:02]Since around 2019 2020, this league hasn't been operating. However, when it was and Cameron played a game, he would take off his jersey and throw it into the crowd because he found joy in sharing the moment with the people who appreciated and supported him. from the series. Jesse currently starring as car on the Disney Channel to pretty much everything. Number 28, Cameron Boy.

[00:05:31]Likewise, he would always take pictures and would always talk to his fans in public. Victor even stated how if someone in public asked if they could take a picture with him, he'd say, "No, but can I take a picture with you?"

[00:05:43]Libby further mentioned there were times he'd speak to kids with special needs and spend a lot of time with them. They described how there was a time there was a kid who had autism and kept running away and hiding during an event and wouldn't talk to anyone, including Cameron. So Cameron stopped what he was doing, approached him, and found a way to sit there and chat with him for an entire hour. Instances like this of Cameron weren't just described by his parents, but were described by many people who have ever been around him.

[00:06:13]This strong feeling of wanting to help others was almost similar to that of his grandmother, Joanne Allan Boyce, who was a renowned civil rights activist and member of the Clinton 12, which is actually a group of 12 black students who were the first to be integrated into a previously all-white high school called Clinton High School in Clinton, Tennessee. Cameron 2 took pride in his heritage. He was Jewish from his mom's side and African-American from his dad's. He stated, quote, "Being African-American and Jewish, I have plenty of ancestors and family members that I can look to for strength and more importantly for a grateful outlook on life. Every one of them clawed and scratched for my sister and I to be in the position we're in today." Victor described that they read to Cameron in his early years. They put him in preschool and he grew up around music since he was an infant. As a baby, Cameron had collic, which is when a healthy baby cries for a very long time for no obvious reason. They tried a lot to get him to stop crying, but they didn't know what to do. But then one day, Victor put on a hardcore rap song while rocking Cameron in his front pack, and he looked in the mirror and noticed how well Cameron was reacting to it. And so, as a baby, in order to keep him from crying, they would play music because after they would play it, his eyes would get big and he'd immediately stop crying. Then as he got older and began developing his interest, it was very clear from a young age that Cameron was destined for success in the performing arts. His friend, actor Karen Bar, said that Cameron was the best, that he was very authentic on camera and off, and that his core essence was truly him. His friend, actress Sophie Reynolds, described how he would always dance out of nowhere, even without music, and he was always humming some kind of tune.

[00:07:59]He's not a performer. He was never putting on a performance. He just like existed and people wanted to look at him. Like his attention was very He was someone that captured people's like hearts and attention very easily. And so almost I would argue that everything that you know about him, it's like even more authentic than you would think.

[00:08:19]>> Karin said that Cameron had the greatest laugh, but that he would genuinely laugh at anything, even things that were terrible jokes. And whenever out, Karen and Sophie could just tell when Cameron would laugh to not make a situation awkward and to be a great friend so people would leave a conversation feeling good because they think Cameron thinks they're hilarious. Overall, they described he was great at making people feel comfortable. And he brought great energy to the conversations he was in wherever he was. And this wasn't just with his friends because there's a clip where he even made Michelle Obama laugh when she was on set starring in an episode on Jesse. There is no treasure map on the back of the Declaration of Independence.

[00:08:59]>> Or so you say.

[00:09:04]>> I made her laugh.

[00:09:07]>> Initially, his dad said he actually wanted to get Cameron into cycling because he himself is a cyclist. But one day, he took Cameron on a cycling ride and he actually didn't enjoy it. He didn't like wearing the tight clothes they had to wear. And even though he was pretty good at it, it wasn't something that he was into. Some things he was interested in though that were similar to his father were basketball and music.

[00:09:31]But even still, it was described that Cameron just showed characteristics that were very unique and creative and he was truly always an artist. Victor described that when he himself was a child, he liked Hot Wheels and because of this, he decided to buy some for Cameron. The thing is, instead of playing with the Hot Wheels by riding them, Cameron would arrange them in the order of their color. And this was his way of playing with them. And this wasn't all. One day when Cameron was about four or 5 years old, his parents went to pick him up at preschool. And while doing this, the staff was like to the parents like, "Hey, we're having a dance recital. You should come see it." The students had a dance teacher that came in once a week that the parents didn't even know about as it was a surprise for them. But when they went, it was absolutely amazing.

[00:10:20]Victor described that Cameron was just shining on stage. He stood out so much compared to the other kids. Most of the other kids weren't really into it, but Cameron was absolutely loving and enjoying every second of it. It got to a point where the kids just stopped what they were doing and were just watching Cameron dance. And from that point on, dance became a significant interest of Cameron's. His creative interests initially were a surprise to his parents, especially considering they weren't in the industry themselves. But his parents saw this joy he had with performing. And he was leading the dance recital so naturally that they decided to take him to dance lessons at a dance place in North Hollywood called the Millennium Dance Complex. This is a place a lot of famous dancers had practiced at, and you might have even seen it today in dance videos posted online. When Cameron got there, he immediately hopped right into the kids group there. He was naturally very coordinated. And interesting fact, despite him actually having scoliosis, which is a side to side curve of the spine, which could make actions like dancing more difficult, he eventually could do flips and all kinds of other stuff. His parents described that he was very observant. He would watch what was going on around him in the world, but a lot of the time he wouldn't participate.

[00:11:39]At first, this concerned the parents to see he wasn't participating in some things, but they realized he was just very intentional and was one of those kids who didn't participate in things until he was at 100%. And this class was only the start because it was then from the age of 5 to 12 years old where Cameron was classically training, spending hours in the dance studio enjoying his time practicing his craft.

[00:12:06]At Millennium, a lot of the kids were involved in commercials and acting. And because of this, Cameron wanted to try doing this himself. His parents thought he might as well try it and started looking into what they could do to get that done. He had never previously done acting classes, yet his acting career took off very quickly. His dad, Victor, said that he was quote taking time off work and getting parking tickets going to auditions, which to him felt like forever as he wasn't used to missing work and navigating the industry. But they didn't really have to do much for Cameron to start booking because it took only about 6 months from when Cameron started for him to book something, which is huge as it can take people years before they get anything. The first job Cameron ever booked was a Disney print ad for a Halloween calendar. But get this, one kid who was also supposed to be in it wasn't cooperating with the shoot. So they actually had Cameron do that kid's part also. So, he had a double roll for his first ever booking and made about $1,200 from this, which is equivalent to about $2,000 today in 2026. At this shoot, he was wearing a Halloween costume and he got to jump on a trampoline. And he had so much fun doing this and just loved it so much.

[00:13:20]From then on, he just kept pursuing it and didn't stop. There was one time Victor remembered he and Cameron were on the freeway on their way to another shoot for a print ad and they were stuck in traffic. Cameron asked Victor like, "Dad, like where are all these people going?" And Victor told him they're going to work. But then this was to which Cameron replied, "I'm glad we don't have to go to work." He enjoyed it so much he didn't even feel like he was doing a job, which he technically was.

[00:13:47]It just felt like any kid going to their soccer practice or dance class. It was just fun. Essentially like the quote, "If you do what you love, you'll never work a day in your life." That specific shoot was also very fun for Cameron, especially as it involved a pillow fight. And eventually, as he progressed in his career, he was spending up to four to eight hours a day dancing, working on his craft, and enjoying every second of it. His mom, Libby, said that quote, "He just had a true joy of life of performing of his craft." Although he started with print ads, this soon led to doing commercials, which then led to movies and TV. At just about 9 years old in 2008, he made his debut playing a young version of guitarist Ryan Ross in the music video that Green Gentleman, Things Have Changed by Band Panic at the Disco. But this wasn't all for young Cameron. Throughout that entire year in 2008, he was literally booked and busy.

[00:14:43]During that year, he landed a recurring role in a soap opera, General Hospital Night Shift, which aired from July 2007 to October 2008. He also made his first appearance in a feature film, a horror movie called Mirrors, where he played the son of the protagonist, as a character named Michael Mikey Carson. In his second film, he starred as a character named Sam Hollowman in the spy movie Eagle Eyee. And just two years later, he made his next prominent film role, playing the son of the protagonist in the very well-known comedy film Grown-Ups. But Cameron didn't just have this impressive acting lineup in film, but he also had some significant TV series in which he was able to showcase his dancing talent. In 2010 to 2011, he appeared in the web series The Legion of Extraordinary Dance. And in 2011, he not only appeared in the Disney Channel series Shake It Up, but he also appeared as a feature dancer in a Dancing with the Star special. In addition to featuring on Shake It Up, he also made a guest appearance in Good Luck Charlie, where he played an impostor version of one of the main characters, Gabe Duncan.

[00:15:51]In 2012 to 2014, he voiced a character named Jake in a Disney Junior cartoon series called Jake and the Neverland Pirates. And what a lot of people, especially of our generation, mainly know him from was his co-starring role as Luke Ross in the sitcom Jesse, a show where his character was known for being a charismatic troublemaker who was confident, carefree, and loved to dance.

[00:16:16]This show was an absolute hit on Disney.

[00:16:18]After airing for a total of four seasons from 2011 to 2015, Jesse came to an end, but Cameron's career was nowhere near over. In July of 2015, he starred as a main cast member in the film Descendants, playing a character named Carlos, who was the son of Kurilla Deville. And he continued starring in the subsequent Descendants films.

[00:16:41]Interestingly, Victor actually didn't want Cameron to be an actor because being from LA, he grew up with some child stars and saw how bad the industry did them and the unfortunate path they ended up on. He was in sales, so being in the industry was never something he expected to be in, but he just made sure to keep this in mind while navigating the industry so Cameron would be all right. Eventually, as Cameron went on to book bigger roles at Disney and began traveling the world to film, Victor left sales to continue fully being Cameron's datager. As mentioned, many described that Cameron was very genuine on or offstage or set. All people from different areas of the shoots and jobs he would do would always tell Victor how his kid was different from some of the other kids. He was really nice, paid attention and took direction. Victor said people would often ask them how they got him to be this wonderful kid and person, but he replied that he just came out this way. They raised him. They took care of him. Did everything to be loving, attentive parents, but quote, "He just created his own path." It can be stressful for kids to not be in school and to deal even with a little bit of fame. For a while, Cameron was actually uncomfortable with the fame.

[00:17:56]But one day, Libby and Cameron were together and actually ran into Corbin Blue, who notably played Chad in High School Musical and Izzy Daniels in Jumpin. And Libby told Corbin that Cameron was struggling with the fame aspect of everything. After hearing this, Corbin took Cameron aside to talk to him, and he just explained how his fans will grow up with him. They're also going to be getting older as he gets older. So truly, you're all kind of at the same place in life, and they'll remain with you from when you're all 8 years old to later when you're all older. Well, what Corbin 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 when forever, but they will grow up with you. So, you guys are kind of all in the same space >> and and he added more to it. I forget what 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.

[00:18:54]And whenever Victor would check in and ask Cameron if this was something he still wanted to pursue, Cameron would always say yes. But this brought up the other struggle that the family faced, which was the fact that Cameron always had so much attention on him. It was hard for his sister Maya to just be known as Cameron's sister. The parents struggled how to navigate this as Cameron kept on getting bigger and more famous. But they said when Maya had a meltdown about this, Cameron was extremely supportive and talked to help her get through it. They described that he was wise beyond his years and knew what to say to Maya to help her feel safe and seen and as if she could be her own person. Cameron used to ask his mother Libby to share her wisdom with him. But a lot of the time when she'd have conversations with him, she felt as though she were his student because of the wisdom he had at a young age. Libby expressed how he was such a passionate person in what he did with dancing and acting. But quote, "For the family, he was a goofball. He was our rock. He was our glue. He was our cheerleader. He was just an amazing amazing human with his public reach was actually able to do a lot with his philanthropic nature."

[00:20:06]Cameron was very passionate about the global water crisis and advocating to end gun violence. He supported the Thirst Project, which is quote a nonprofit organization that works with the support of young people to end the global water crisis by building freshwater wells in developing communities that need safe, clean drinking water. In 2018, he even won the pioneering spirit award at the organization's thirst gala. He also did a lot of work regarding anti-gun violence, even developing a social media campaign called Wielding Peace to quote, "Help reduce gun violence using the power of photography to show celebrities, gun violence survivors, and gun control supporters wielding something peaceful." And he was also passionate about encouraging young people to find creative outlets to express themselves. He had always been very into his craft, but particularly in the years 2017 to 2019, Victor described he was very locked in with it and wanted to build off of the foundation he had set with the things he learned and also just his natural ability that he had.

[00:21:13]But despite everything seemingly going well with his career, relationships, and advocacy, there was one thing in particular that out of the blue began affecting him. On New Year's Eve, Thursday, December 31st, 2015, Cameron, who was 16 at the time, had a sleepover with two of his friends at his house.

[00:21:34]Eventually, after the New Year's countdown was done, he and his friends went to sleep, sleeping on the floor in his room. But just a few hours later, at 6:00 a.m. that Friday morning, Cameron's friends ran into Victor and Libbyy's room, frantically stating that Cameron was spitting up blood. His parents quickly ran to the room and when they got there, Cameron was quote completely out of it. Victor tried giving Cameron water, but he pretty much just ended up pouring it all over himself. They tried asking him questions who he was, where he was, what year it was, but he wasn't able to answer. Libby described it was like he was vacant. Victor picked Cameron up, brought him to the kitchen, and put him up on the counter, and they quickly called 911. After emergency services arrived, as protocol, they had to take Cameron away from the parents to check for child abuse. And once they ruled this out, they asked which parent would like to go in the ambulance with him, to which they decided that Victor would head to the hospital. They were at the hospital for a while, and Libby was just at home extremely worried.

[00:22:41]Initially, Victor thought that since he was spitting up blood, maybe Cameron was having a gastrointestinal problem.

[00:22:47]However, it was while they were there when they were informed that Cameron actually had a seizure. This is quote a sudden burst of electrical activity in the brain. It can cause changes in behavior, movements, feelings, and levels of consciousness. They learned that he wasn't spitting up blood, but rather was bleeding from biting his tongue during the seizure. With this, Victor was really glad Cameron's friends were over because who knows the physical damage that could have happened had Cameron just been in there alone. But nonetheless, the family was completely blindsided. Victor was just confused on how Cameron could have had a seizure. He knew what a seizure was, but he didn't know anyone who's ever had a seizure.

[00:23:33]So, to his knowledge at that time, he thought in order to have a seizure, there would have had to be a trigger, like flashing lights, for example.

[00:23:42]Epilepsy is defined as quote a long-term condition that causes seizures due to unusual electrical activity in your brain. Seizures can be caused by many things including stress, lack of sleep, illness or fever, alcohol withdrawal, and even certain medications amongst others. For people who do experience seizures, these are common triggers for them. But some other triggers can include flashing lights like Victor had mentioned, not eating well, and even drug use. The medical staff further explained how because this was just one seizure, this wouldn't yet be considered epilepsy because they said that in general, everyone can always have one free seizure in their life. But they said that when someone has a second seizure, that's when they're diagnosed with epilepsy and then they start to treat you. Libby said that in retrospect, knowing what they know today, that's not the best information to give because it essentially minimizes it and brushes it off. Victor said at the time he wasn't even thinking about epilepsy because it was never mentioned.

[00:24:41]And Libby said how brushing it off like this doesn't really allow people to prepare for what could be the potential reality. Especially because it was just 13 months later around February of 2018 when Cameron in fact experienced his second seizure. After months had gone by without Cameron getting another seizure after the first one. And being that the health professional told them that they could just have one free seizure, Victor for a while thought that this might just be the case. He said that in a sense he almost forgot about it because life went on so smoothly. Everything was going normally and again it was explained to them that this was probably not a big deal and just a one-off thing. But once the other seizure came all those months later, that's when it truly got serious.

[00:25:26]Cameron was subsequently diagnosed with epilepsy and they quickly had to start figuring out what to do regarding getting medications, information, and treatment. This was actually a very difficult process for them. Victor even later described that this is where his quote frustration with the medical system came. The family wasn't given much information or tools regarding this diagnosis. Libby described that all they got was a brochure. Before Cameron experienced the second seizure, he wasn't even referred to a neurologist.

[00:25:56]But after the second one, he began seeing a neurologist at a Kaiser Permanente hospital in California.

[00:26:03]Still, even with this, the neurologist they saw gave the medications, but they still barely gave any information. There was nothing substantial with significant resources or information regarding just how much epilepsy can drastically affect someone's life. There are three main types used to classify seizures.

[00:26:23]Generalized, focal, and unknown.

[00:26:26]Generalized seizures affect both sides of the brain. Focal seizures start in one area of the brain. And with unknown seizures, the beginning of the seizure is unknown. And thus, it's not known whether the seizure is a generalized one or a focal one. And these types have subtypes which all differ in the symptoms you might see in the patient.

[00:26:44]For example, depending on what part of the brain is affected, different seizures can result in different movements such as stiffening, jerking, twitching, even staring. Likewise, some people have a seizure every so often, and some might have a seizure even multiple times a day. Cameron happened to be someone who only had about one seizure every year. And because they were so infrequent, it was hard for them to determine or pinpoint what was working and what wasn't. They did a CAT scan and other scans of his brain, but it looked relatively normal. They might have seen some small abnormality, but they didn't see any spots or specks in it that was of note. And so they tried many treatments, but still they had a difficult time pinpointing what could help. For one, they gave him a medication called Kera, also known as leveracetam.

[00:27:45]This is an anti-comvulsive. At one point, they even had him do an electrophilogram or EEG, a test where he had to wear electrodes with wires attached to his head connected to a portable device to assess the electrical activity in his brain. And he even went to a Rams game with this on, covering the apparatus with a beanie because he wanted to keep living life normally and didn't want to just stop doing anything because he had seizures and was treating it. Doing this, however, also didn't really show anything. And finally, they then tried inducing seizures by using things like flashing lights as a trigger, but he also had no response to this. They were just trying to figure these seizures out, but still with how infrequent they were, they were never able to conclusively determine what was causing them because there was no way for them to be sure if it was working or not throughout the year. Throughout his time navigating the routine of consistently taking medications and trying to treat the condition on top of his busy schedule, filming for various roles and practicing his craft, Cameron was still naturally altruistic and very giving. He would often spend his spare time visiting sick kids in the hospital.

[00:28:52]And even though he'd be scheduled to see just a handful of kids, he still made it his mission to go to every room on the floor to make sure all of the kids were visited. This was something he did before and even after being diagnosed with epilepsy. His father described that since being a teenager, Cameron knew the potential he had with being able to positively affect people. He didn't feel sorry for himself. further describing, quote, "He's the kind of kid that even though he was dealing with his own thing, he would go to Children's Hospital and visit every kid on the ward and would not leave until he saw every single person. He would literally give you the shirt off of his back. I've seen him do it." In May of 2019, just before his 20th birthday, Cameron moved out of his family house to move into a home he purchased, still in the LA area with his two friends, Karen Bar and Sophie Reynolds. Karen Bar was actually Cameron's co-star in the Disney TV series Jesse playing his younger brother Ravi. They met during their second round of auditions for the show. Karin had seen Cameron and Victor in the waiting room. And after the audition, Karin's dad asked Karin how he thought he did and he just said he thought he did good, but that the kid that was in the waiting room with them, which was Cameron, he thought he was the biggest competition.

[00:30:11]He just had a feeling because Cameron had done really well. Then during final round auditions, he and Cameron were called in to audition with or against each other, and both of them got their roles. When Karen first moved to California for filming, he had no friends. He was just 12 years old, and it was just him and his dad in the apartment. That being said, they lived in the same neighborhood as Cameron's family. And immediately after finding this out, Cameron was like, "We should hang out after work." When Karen went over to their house, he initially thought that Cameron, Victor, and Libby would get sick of him and want him to go home. But in reality, they always wanted Karen around. He brought up an example of a time they were going out to dinner, and Karen thought that they were kicking him out so they could go. But in reality, when they said, "Were you going to dinner?" they meant we're all going to dinner because they wanted him to come. All in all, Cameron was Karen's first friend in LA, and they have remained close ever since. Their other roommate, Sophie Reynolds, was also a co-star of Cameron's in the Disney XD comedy TV series Gamer's Guide to Pretty much Everything. Cameron also met Sophie at one of the final auditions she did for the show. She was alone in the hallway after her audition and was really nervous about how she did.

[00:31:25]Cameron at the time already had his role solidified, and so he walked out to Sophie, gave her a fist bump, and said, "I'll see you soon." Sophie heard Cameron and Victor laugh in the middle of their sound stage and this was the first time she met Victor. She and Karen actually described how Cameron and Victor had the same laugh and smile as each other. They further said that Victor and Libby were a very arms open welcoming family and that their home felt warm and safe. As mentioned, his friends described how Cameron was always in his own world dancing. Sophie said that she too grew up dancing her whole life and so she and Cameron always bonded with deep dives about music and dance. They said how Cameron never judged others for being bad dancers or being cringey. And it was by the help of Cameron he and Sophie were able to get Karen to dance a lot as they made it a mission of theirs. Once Cameron began working with Sophie, he thought she was really cool. So he had Sophie and Karen meet each other for all three of them to hang out. They all were about 15 16 at the time and ever since then the trio was inseparable. Moving in together was another step in growing this strong bond they had. This was a point in Cameron's life where he was transitioning from being a Disney actor to being an actual mainstream actor because something known in the industry and Hollywood acting space is that they don't really take Disney actors seriously. Once you're done with Disney as a child actor, it's not easy just breaking out into mainstream roles. Gamer's Guide got cancelled in January of 2017, and Victor described that this was the first time Cameron struggled to get booked. He went through that rough patch of starting again and essentially re-establishing himself as an actor. But just that he had done before when he was younger, once he did start booking again, he was back on a roll. He booked a role on an HBO comedy series called Mrs. Fletcher and then a drama thriller called Runt.

[00:33:22]Victor described he essentially reinvented himself as an actor. He was so locked in with his craft and was working really hard to be taken seriously as an actor. Things were looking up for Cameron and his career.

[00:33:35]But unfortunately, it wasn't long after when this all tragically changed. On the night of Friday, July 5th, 2019, Cameron, his parents, and his sister Maya all went out to dinner as a family.

[00:33:49]With everyone's busy schedule at the time, they weren't always able to get together as a family. But after his mother called him that Friday, asking him about his plans for the night and suggesting they should have dinner, he said of course and got ready to meet with his family. Now, on that very day, just north to northeast of LA, there was an earthquake in a town called Ridgerest, California, this earthquake was actually the strongest earthquake in Southern California in two decades. On this night, LA and surrounding areas were experiencing aftershocks from the earthquake. And so, while they were at dinner on the patio, they were actually rocking. Despite this, this was just an ordinary dinner for them. One moment Victor remembered as being cool and funny was when Libby asked Cameron about how his house was doing and he replied that this house was quote the epicenter of everything that's cool. The parents described that he and his sister Maya were cracking jokes. They were teasing their parents. They were taking pictures. They also mentioned Cameron also actually didn't like his meal, but they were having a good time with each other and everything was normal. After dinner, they dropped Cameron off at his house. They said, "I love you." And after walking to the door, the last words Victor heard him say was, "Daddy's home." as a joke, clowning around with his friends. Throughout the rest of the night, Victor and Cameron had been texting back and forth about the Lakers.

[00:35:12]Libby described she wasn't sure exactly what the situation was, but Cameron apparently had been upset potentially regarding something relating to the Lakers not drafting someone. And so, he sent a sad face on text about it. These were usual texts. they would send as he was a big Lakers fan, so they would talk about basketball often. It was sometime between 12:30 and 2 am when the text stopped, which makes sense. It's late, so he probably went to sleep. But it was just later that day in the early morning when he was found in his room unresponsive, and immediately emergency services were called. Unfortunately, after arriving at 2:45 p.m., Cameron Boyce was pronounced dead at the age of 20. The news of this was announced to the public very shortly after. And the next day, on Sunday, July 7th, the tragic news was all over news articles and social media. Everyone was just shocked to hear about Cameron's passing, but not just the general public, because even his loved ones were as well. 2 days after he passed on Monday, July 8th, an autopsy was performed. Initially, it states that quote, "The cause and manner of death were deferred, but then they did some additional testing and determined that what he actually passed away from was something called sudden unexpected death and epilepsy or sudep."

[00:36:44]According to epilepsy.com, quote, "Sudup is the sudden unexpected death of someone with epilepsy who was otherwise healthy. In suitup cases, no other cause of death is found when an autopsy is done. Sudep has no known ideology, meaning the reason for why it occurs is not known. But what is understood is that it's not the seizure that causes the person to pass away, but rather it's something that occurs as a result of the seizure." Possible causes of suitup that researchers are currently looking into include problems with breathing, heart rhythm, and brain function, as well as a combination of two or more of those causes. Researchers also have been looking into suitup in relation to circadian rhythm. Circadian rhythm is your body's natural 24-hour clock, which keeps your body operating on a healthy wake cycle. Nearly every organ and tissue has its own circadian rhythm. So what essentially is theorized is that during a seizure, if the circadium rhythms for these organs get thrown off, that could cause problems. For example, when someone has pauses in their breathing while they're asleep, this is called sleep apnea. During a seizure, one's breathing might end up temporarily pausing. The thing is, if the pause lasts for too long during a seizure, this might reduce oxygen in the blood.

[00:38:06]Not just this, but when looking at the heart, a seizure might cause a dangerous heart rhythm or cause one's heart rate to be too slow. And even if not related to one's rhythm being off, a seizure could just cause someone to suffocate if their airway is blocked. During seizures, Cameron would bite his tongue or bite his lip, and he also wouldn't have any memory of the seizure. Libby believed that what might have happened during that last seizure Cameron had is that the seizure was so bad he just couldn't breathe or his heart must have stopped. Numbers suggest that approximately 1 in 1,000 people with epilepsy pass away from suitup each year with the risk being especially high for those with uncontrolled epilepsy at 1 in 150 and is actually the leading cause of death in people with uncontrolled seizures. However, his family and loved ones didn't know, nor had they been told about SUDEP until that very day when the coroner told them that's what happened.

[00:39:05]And they would go on to learn that it's not uncommon for patients and families to be left in the dark about this. In October of 2020, a little over a year after Cameron had passed, Libby featured on episode 51 of a bi-weekly podcast produced by Cure Epilepsy called Season Life. This interview was hosted by writer, speaker, and Cure Epilepsy board member, Kelly Cervantes, and it also featured another guest named Jessica Brandice, whose 8-year-old son Wy had passed away from Pseudep. In this episode, they discussed how the incidence of SUDEP is more common than once thought. Libby had been doing research on the topic and she said that after the bit of research she had done in the last year and few months. She believes and research suggests that there may be far more than one in 10,000 people who have epilepsy who pass away from SUDEP each year. It's just that it's under reportported. The problem with suitup is that it's a diagnosis of exclusion, meaning there is no positive evidence that directly determines that it caused a death. A seizure is a functional disruption of the electrical activity in the brain as opposed to a structural or physical condition that leaves distinct visible damage to the body or at least directly. SUDUDP can only be determined after a thorough investigation rules out all of the other possible causes and is unable to identify any other anatomical or toxological cause of death. Libby described how often time some people either don't get an autopsy performed for them or the coroner or a medical examiner don't report suitup as the cause of the patient's death. It's stated that it's apparently heavily under reportported because it takes more work to assess that a person has passed secondary to epilepsy. Thus, it's easier for a coroner to say it was a pulmonary or a heart issue. Because while yes, that was the direct cause of the person passing away, it was the sudep from epilepsy that caused it in the first place. In Jessica's son Wigh's case, whenever there's an unexpected death of a minor, this almost always prompts a mandatory investigation. But Jessica described that some parents even mentioned having to fight for their child's death to be considered suited up from these investigations. It took months of them going back and forth with their medical examiner before getting the cause of death for their child. And because of the fight she had to do just to get the death properly reported, she also believes that the number is higher than one in 10,000. Libby worked for LA County, so this allowed her to have some help in making sure the coroner truly reviewed the case closely, but in other cases of suitup, this isn't the reality.

[00:41:56]Victor 2 described how the true numbers of death from suitup is not known because of the lack of them being reported as that. When diagnosed, Cameron's family knew the seizures would be a part of his life. But with it being so infrequent, they thought they could manage it. The urgency wasn't really there because they weren't given that information about the condition and the tools to properly prepare for it. His neurologist, nor did anybody on the care team ever mentioned suitup to the family. The conversations they had with the doctors essentially made it seem like it wasn't a big deal and he just needed to take his medicine. They felt as though the medical community could have quote armed them better with Libby further explaining quote there's a balance between freaking a parent out and just giving them tools. Jessica brought up the example of how you tell people that before driving they should put on a seat belt or else they could lose their life in a crash. While it's unfortunate and unlikely, it's still a possibility. Even without knowing they could crash and lose their life while driving, people still get in cars and drive nonetheless. So, when it comes to epilepsy, people and families are also going to be continuing to deal with epilepsy, but they should still be given all of the information about what could occur. The same way we know when driving, we could possibly crash. She also described being informed would have given them the chance to advocate for their child and look into things like monitoring devices, whether it works or not. Being able to have the option to invest time to look into it at the very least would have given them a chance and likely prevent a lot of whatifs. Libby believes there should be some sort of standardized way of giving families these tools and also give them a way to understand that the condition could be fatal. This includes having a starter kit when someone is diagnosed with epilepsy, going over what you need to do, how to live with it, things to watch for, how often to go to the doctor, and more information about medicine or the treatment protocol. And Libby even went back to the Kaiser Pimente Hospital where Cameron's neurologist was at to speak to them about this. When looking back at the original ER doctor, Libby explained how it's easy for people to view doctors as end- all beall, but she pointed out that as an ER doctor, that doctor's knowledge of seizures and epilepsy wouldn't be as profound as a neurologist. So, in retrospect, it's best to not hang on to every word one doctor says and go get a second opinion.

[00:44:32]Specifically for families just finding out their kid has epilepsy if they have a choice. She recommends getting to a level four epilepsy center and seeing an epileptologologist, which is a neurologist who specializes in epilepsy.

[00:44:45]While she stated she doesn't know if it would have saved his life, she noted that epileptologists study this on a regular basis and have in-depth knowledge about epilepsy, whereas a neurologist who doesn't specialize in epilepsy may or may not have that in-depth knowledge. So if she knew what she knew now back then, she said that's what she would have done. And she encourages others even on your own part, taking the time to learn about the condition, keeping a journal, figuring out triggers, and just mapping everything out. And even if there's medical professionals who tell you it's not serious, you need to know that it is. While she says the medical community should be obligated to have informative conversations, she emphasizes how important it is also to take it seriously and be your biggest advocate.

[00:45:32]>> And I think for us it's really important that we share our story and that we help doctors hopefully who are listening and people who are living with epilepsy to get information and to share information. you can be armed with information um and you can you know change whatever issues you need to if you have triggers if you have there's so much information that's important to note and you know I don't know that had we had any particular information about Cameron that it would have changed the situation but I do feel like it's so important that people who are living with epilepsy or any chronic issue get armed with information they need that >> and you want to know >> in general this brought up a very big problem regarding starting education about suitup, not just for patients, but for the medical community. In January of 2020, Cameron's parents featured in an episode on the doctors and Dr. Travis Stok, alongside the other physicians on the show explained how when they went to medical school, suitup wasn't something that was talked about. And apparently, some physicians had never even heard of it. A study which assessed 173 adult patients with epilepsy found that 65.4% 4% of neurologists rarely or never discussed suitup with patients. 57.7% justified not discussing suitup with patients because the information could affect their quality of life. And 73.1% of neurologists were considered as having insufficient knowledge of SUDEP.

[00:47:00]And of this group, 84.4% of patients had never even heard of SUDEP. So, the problem is not just that patients are unaware, but physicians might be too.

[00:47:10]With how infrequent his seizures were before Cameron passed, they weren't really as involved in the epilepsy community. Being that he was a mature young adult, the family was also sort of taking Cameron's lead on the situation.

[00:47:25]About 6 months before he passed, Libby and Cameron actually had a conversation where she told him she was thinking they should maybe change his neurologist. But Cameron told her he's good, that he has a sense whenever he's going to have a seizure, and that he's also been doing his due diligence staying hydrated and taking his medication. So, she didn't press further. Even though Libby knows that there's a good chance that even had she did something, it likely wouldn't have changed the outcome, she said she still beats herself up for not doing something then. And it was true that he was doing everything he could. In fact, during the medical examination after he passed, one of the things they found in his blood was Kera, the medication he was doing. So, it was clear that he was diligent with his treatment plan. It's just that currently there's no way to know if suitup is going to occur. And nonetheless, no matter what anyone does, the outcome still would have not really been avoidable because she described if you're not having seizures, they don't end up changing your medication or changing anything at all. with her saying, quote, "It's a catch 22 for people in our situation." The parent said that everything regarding Cameron's experience with epilepsy that they thought was positive in actuality was negative. As Libby worked for LA County, she would often read medical records of people who were homeless in LA, experiencing substance use while having seizure disorders. She said that part of them being quote lulled had to do with the fact that a lot of the people whose records she'd read would have multiple seizures a day. Cameron only ever had five total seizures in his life. So, she thought he must have been fine because he'd only have one every year or so. In addition to thinking having less seizures was a positive, Libby also believed that since he had them in his sleep, he had to have been safe because in her mind, if you're asleep, you wouldn't be seizing in a dangerous spot like stairs while swimming or driving because you'd be in a controlled safe environment. All five seizures Cameron had were in his sleep. But what they learned after he passed was that having seizures in your sleep is actually more commonly associated with people passing away from SUDEP. Libby said that if she thought he could die from a seizure, she would have never let him out of her sight, which she said would have been awful for him. Victor described that ultimately Cameron had all the typical markers of someone who was susceptible or had a high risk for SUDEP. For one, males have a higher risk than females.

[00:49:59]He was between the age of 20 to 40 which is the age group that studies have indicated has the highest risk of pseudep. He had a lot on his plate for example first year of college moving out the house. So this could have been causing stress. And lastly he was an active young man working hard hanging out with friends practicing his craft etc. So he might have not been able to get good sleep. He didn't mention whether Cameron did this, but another example Victor mentioned was sleeping on your stomach, as researchers have found an association between the two, but they're still unsure the reason for it.

[00:50:31]Victor further stated that one of the researchers the boy's family would eventually go on to give a grant to for research actually is working on figuring out that correlation. The grieving process for Cameron's family and loved ones, understandably, was not an easy time. Victor described, >> "It's not cliche to say, you never know.

[00:50:49]>> You never know.

[00:50:49]>> You never know. It's it's not cliche to say, you know, I used to, you know, when it's somebody else, you know, you always feel bad, but until you really it hits you, God, you just you just can't understand it. It was almost like I left my body.

[00:51:10]>> Yeah.

[00:51:11]>> It was like I said it once before and it still kind of feels this. I kept waiting to wake up from a nightmare.

[00:51:18]>> Yeah. like I I just wouldn't accept that it was real.

[00:51:22]>> They first saw a therapist, but Victor said that at the time it did nothing for him. It made him more sad and it wasn't helpful for him. Libby, on the other hand, got involved and connected with multiple support groups, which kind of helped for her. Libby described that her whole work and life involved solving problems. But Cameron's passing wasn't just anything that could be solved with her usual problem solving methods. For six months to a year, she kept trying to problem solve how to get through this situation. But in the second year, she realized there's no solution, therapist, support group, distraction to solve this. Victor said how he didn't want to feel guilty for being able to enjoy his life, but it felt like that sometimes.

[00:52:05]And Libby knew that Cameron would want his family to continue living and loving one another. They just wanted to be able to turn this tragedy into something positive. And with this they started living more intentionally. Libby was able to find help with grief through her support group. Victor was able to find help through his cycling group who he was very close with. They began adopting dogs and they were able to experience the importance of community. Being that Cameron was famous, while they understood people had good intentions, they found it hard having people always giving condolences whenever they'd see them as it was overwhelming and kind of just created this constant sadness. They describe that while people don't have to be dismissive of him, it's instead best if they mention Cameron without mentioning sadness, saying something good about Cameron if they approach them. and they ensured to continue Cameron's legacy and all the good he was doing in the world. Within the week after Cameron passed, family, friends, and loved ones all came together to try thinking about what they can do to remember Cameron and keep his message alive. At the boy's family home, they all sat around the kitchen table discussing their plans for this. And this is when they ultimately came up with the idea to start the Cameron Boyce Foundation. They officially announced the launch of the foundation on Monday, July 15th, 2019, just 9 days after Cameron passed with Victor posting in a tweet, quote, "Let's not talk about it.

[00:53:42]Let's be about it. Let's do good as Cameron would. Let's keep his legacy alive." They weren't given the tools to prepare themselves for something like this. And that's what they wanted the Cameron Boyce Foundation to be about, awareness and resources. Libby said she knows people are safe because of him and his story. And while that doesn't necessarily heal her, it's nice knowing something good came of it. When Cameron passed, a lot of people came out of nowhere on social media just messaging Victor about how they had epilepsy or experienced a seizure or knew someone who did. And that's when they realized the effect they can have on people's lives. with a foundation focusing on epilepsy. Initially with the foundation, they had a very huge mission of continuing with all of Cameron's passions and causes he had been working on which included the thirst project, anti-gun violence expression through art. But then after thinking about the fact that epilepsy is what took his life, they realized it would truly be important to bring more eyes to epilepsy. And so they decided to just focus the foundation on epilepsy awareness and research. Eventually they were able to find a director named Heather and then one named Ben Teller. And they really worked on getting this foundation going to help with the cause. Cameron's loved ones also remained heavily involved with the foundation with all of them working on different areas and doing what they can to help with it. and the outpouring support they had from the public was helpful in getting it going, especially as they started it while they were truly in the thick of grieving. The mission of the foundation is to quote, "Honor Cameron's legacy by empowering young adults living with epilepsy through education, support, and community while working to end suit." A main goal with the organization is to educate people about SUDEP, not scare them. And as mentioned, another main goal is to get suitup properly reported on death certificates. As Jessica Brandis mentioned on the Seizing Life podcast that it's important for these numbers to be reported correctly so that they can get the NIH funding for research, treatment, and or prevention. Libby and Victor described how epilepsy is one of the most common serious neurological conditions, yet it's hardly talked about. And Victor stated that he personally wants to dissolve and get rid of the stigma surrounding it because historically epilepsy has always been a misunderstood and stigmatized condition.

[00:56:11]There are many myths and misconceptions surrounding epilepsy. For example, many people believe epilepsy is a mental illness. Some even think it's contagious and many believe it's something people should keep private because they think it's shameful to have. Additionally, for those who do know someone with epilepsy, they may feel very worried that they have to be around the person constantly in case they start seizing and are alone. Or on the other hand, they may feel on edge being around them, that they might just end up seizing right then and there. Victor was really hoping to get public figures, whether it be celebrities or athletes who had epilepsy, to come out and share their story, to get eyes on it, the same way something like cancer, for example, has a lot of awareness on it. since one of his concerns was that they know there are public figures out there with epilepsy. It's just that many don't talk about it. Approximately one in 26 people will develop epilepsy at some point in their life. And Karen Bar described that he thinks once people get diagnosed, it feels like the conversation has to be put on a pause simply because there's no cure.

[00:57:16]>> Yeah. I think like one thing that I notice first to pick up what we were just talking about once people get diagnosed I think it feels like the conversation hits a pause button because we don't have a cure yet that like hey let's just find you some meds that you feel comfortable with that don't have a crazy amount of side effects and then great you're on your way and like that feels like a pause in the conversation until we have a cure and we want the conversation to be ever evolving >> while the Cameron Boyce Foundation did partner with a large organization called Cure Epilepsy, which helped them find researchers. Cameron having notoriety and having a huge fan base, especially of youth, it helped grow the foundation more and gain traction, bringing eyes to epilepsy that otherwise wouldn't have from the organizations. But Victor described that there's people who are even bigger who have epilepsy and they want them to come out and share their story. He further said that he understands that not everyone wants to share their health story with the world, but he acknowledged that it would be helpful if more people did because considering a lot of young people develop epilepsy with having so many eyes on you, especially from young people, it would help get them somewhere to go to have information and not be in the dark about their condition like how they were. Karen said that there weren't a lot of resources for those in the community. and a lot of young people, whether they were diagnosed or a loved one, didn't have a voice. So, he said that's the gap they wanted to fill.

[00:58:43]Sophie said that the foundation is about lending a voice where it's needed. So, listening to the epilepsy community to find out what is needed and working on that. And ultimately, Karin said they're pushing for advocacy and research to find a cure and end SUDEP. So far, the Cameron Boyce Foundation has invested $425,000 US to research grants for Sudup with Cure Epilepsy, contributing to the more than $5.8 million Cure Epilepsy has awarded in suitup grants and over 43 research projects they've funded.

[00:59:15]Furthermore, the Cameron Boyce Foundation has educated over $18,000 people through online resources. They have a Facebook support group for young adults with epilepsy called Now What and they've even launched the Now What podcast where they provide resources and information discussing things like what to do, next steps to take, how to navigate their life with epilepsy, etc. I think Cameron would really want people to understand the power in like the community that they have around them, no matter how big or small, just like the friends near you and to always have like an idea to, you know, to be creative and to really stretch your brain and just like try stuff and fail and try again. And um yeah, I mean, he was seriously like just the he just was the man of a million talents. He would just be like, I'm deciding to learn this new thing today. I'm going to invite Kin over. He's going to watch. He might look at me a little crazy, but I'm going to try it. I'm gonna have Boo Boo come over. We're going to learn how to make jam. I remember that was like one of the last things he did was he had all his friends over and they were making jelly together and I was like, why? He just felt like it. Why not? Um so just, you know, like just go after it. Just do things just to do things and um enjoy doing them.

[01:00:30]>> They want people to not just be a statistic, but to feel connected and seen. And so they make sure to share a lot of patient stories and encourage the community to send emails and DMs if they have any questions. The foundation also hosts an annual fundraising gala called Cam for Our Cause. Overall, the boy's family described how they were so grateful to have that last night with Cameron. Victor described that the last thing he told Cameron was, "I love you."

[01:00:56]And he said he was so grateful he saw him before he passed because it would have been even more devastating if he didn't. Libby the day before an interview on the Brain and Life podcast in February of 2023, spoke to a neurologist who told her he uses Cameron's story in his discussions. And the boy's family are able to just witness the lives that have been saved because of Cameron. They further described how they know Cameron would be proud of what they're doing and also proud of his best friends who the parents describe as ride or dies, especially Karen and Sophie. Libby described how Cameron was like an anchor that everyone depended on for sanity, reason, fun, etc. And seeing how others, including his friends, would say this about him really reinforce that. Some advice and encouragement they have for young adults is to work within your own community. One doesn't have to do something huge to make an impact. They could just focus on their interpersonal relationships, having conversations with neighbors or friends. You don't have to think too far into the future and let it get you down about not doing enough because doing anything is better than doing nothing. Kin described that the willingness to want to do better will take you far and that overall micro changes lead to macro ones. It's clear that Cameron was very loved not just by his family and friends, but also by all of his fans and anyone who's been able to come across him in life. The impact he has left while he was alive and even now is huge and his story will continue to be very important in spreading the word about SUDEP and epilepsy. As Cameron once said in his speech accepting the pioneering spirit award at the Thirst Project Gala, >> we all we all go and um I hope that all of you um really think about what it is that you want to leave. We all have material things. We all have things that we own that we like and we, you know, we uh treat ourselves and all that stuff, but what you leave should be bigger than you. Um, and I I I really believe that.

[01:02:53]Yeah. But yes, that is it for today's video. What are your thoughts on this story? Did you know much about epilepsy?

[01:02:59]Have you heard about SUDEP? Was there anything that surprised you? Please comment your thoughts below and don't forget to subscribe so you don't miss any other videos on medical cases, crime, and mysteries. Bye now.