# Living with 3 Rare Disabilities (Including 2 Genetic Deletions)

## Метаданные

- **Канал:** Special Books by Special Kids
- **YouTube:** https://www.youtube.com/watch?v=h8beNqCpgrk
- **Дата:** 16.04.2026
- **Длительность:** 30:32
- **Просмотры:** 46,476
- **Источник:** https://ekstraktznaniy.ru/video/48359

## Описание

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Camden was diagnosed in utero with agenesis of the corpus callosum and two rare genetic deletions. After these diagnoses, doctors recommended termination. His parents chose a different path.

Now 8 years old, Camden requires 24/7 care and is nonverbal. But he is also full of life, often smiling, and deeply loved by his family. Through sharing Camden’s story, his family hopes others see that there are many different ways to exist in this world and that those differences are okay.

## Транскрипт

### Segment 1 (00:00 - 05:00) []

- [Chris] How would you describe Camden to somebody meeting him for the first time? - I think we normally just use the catchphrase, you know, "He has special needs. " Because his condition is not, we don't have like a syndrome or just one thing that we, you know, we say. But we just say that he's- - He's probably one of the happiest people you'll ever meet. Cam has agenesis of the corpus callosum. - What does that mean? - So he has, you know, you have two hemispheres in your brain and there's a membrane in between it. he doesn't have that membrane. So his brain can't communicate properly. And then he has two deletions of chromosomes. I think it's two Q13 and then a part of his eighth chromosome is missing. And the eighth one is pretty large. But we don't have any syndrome, we don't have a disease. Like there's no name to it, I think just 'cause it's so rare. - [Chris] How old is Camden today? - He just turned eight years old. - [Chris] If somebody wants to be Cam's friend, what should they do? - You should bring some food, right? - Share snacks. - Share some snacks with you. Like he loves people, right? And I think, I think just the best way to become his friend is to like look him in the eye, grab his hands, and just be willing to let him sort of observe you and look at you and feel you out. And then just be willing to spend time with him. I think that that's the biggest thing. A lot of the people who've got to know him really well, they've just been willing to hang out with him and do life at Cam's pace. - Hey, how are you? If you would like to be friends, give me a high five. High five, high five. This one might knock me over. (Cam laughing) Go ahead. Whoa! (Cam laughing) (bright music) Welcome to SBSK. We believe that everybody has a story that's worthy of being heard. When we listen to one another, the world becomes a closer place and we all benefit together. So without hesitation, let's meet today's friend. - But yeah, we just say he's our little miracle baby and you know, that he's just full of life. - [Chris] Why do you say that he's your little miracle baby? - So at the 20-week ultrasound, you know, it was the first time having kids. We were like newly married and we went in, you know, not expecting anything to be wrong, but you could tell immediately there were like something's not right there. So we found out that there was, (Cam whimpering) the agenesis of the corpus callosum was missing. They said there's an 80% chance that this is it, right? But this is the only problem, and, you know, we'll just address it from there. There's 20% chance that there could be more. And then, so we did the amnio, and then of course, we were in the 20%, and they said that there was some other things going on. So at that time, we had found that he had some deletions of within his different chromosomes. And so, a deletion is just some missing genetic material, right? And from what they said, it's better to have more than less. That started that process of, okay, well, what does that mean? What does it look like? We went through the process of meeting with, thankfully we're here in the Philadelphia area, and we have access to the Children's Hospital of Philadelphia, which is the best hospital in the world for kids. And we had access to some of the best geneticists and doctors, and so as time went on, you know, they would kind of give us more information, but at the eight-month mark, we met with their whole team. It was almost, they felt like they were sitting us down and being like, hey, we don't think he's gonna make it. We don't think that he has enough of the genetic material to tell him how to breathe and how to operate. And so they were saying to terminate the pregnancy, they really were fighting us on that. We obviously said, you know, we don't believe that. We didn't want to do that. - [Chris] What was the conversation like when the medical professionals recommended termination? Is it simply you say no and that's the end of it? Or is there a back and forth? - Well, so, you know, we're believers. And we, you know, that's just not what we really believe. I don't want to get like, you know, whatever, too political here. But we just, that's just not what we believe, right? So at the 20-week ultrasound, the doctor, I literally said, don't even tell me what you're gonna say next, 'cause we're not gonna do it, right? But she goes, "I legally have to. " So she did it. Then the eight-month ultrasound- - There were a lot of appointments in between. We had an appointment almost every week or two weeks with geneticists and doctors

### Segment 2 (05:00 - 10:00) [5:00]

because we were waiting for the genetic results of the amnio, and each step it got a little worse, and more information that we got about his diagnosis, it just got worse. - Yeah, it was never good news, it was always bad news. - So each appointment that there was more news and it was more bad news The conversation kept coming up like he is going to be either not compatible with life or more burden to you than having a child is worth with, you know, they said he would be disfigured and have all these, you know, limitations and they didn't know what quality of life was going to be. So it was almost every appointment that we went to. - But I think the hardest one was the eight, was when we walked into the geneticist at Penn at eight months and they were like, "We can't even do it in state, but we can find you somewhere in the country that will do it," you know, and it's like at that point it was just like, to me, it was still like no, but and to us was still no, but just the fact of like, no one had given Cam a shot, right? And, you know, looking ahead of now, it's like, you know, you're like, it's unfathomable, but I just think the hard part was like, I get it from the standpoint of like the quality of life that they thought would be, for what they would be for him. So I don't even like, I don't personally get mad at it because I'm just like, I think that again, I always, my view of life is I always try to assume the best in people. (Cam whimpering) So when they said that, I think they were thinking that they were honestly helping us, but, you know, I think that's a- - And I think with how rare his deletion is and how large it is, they were honestly scared as well. I think the not knowing and not having any research on it, and there's not even a similar case really to his that they didn't even know what else to tell us. - [Chris] How rare are his deletions? - From what CHOP has and UPenn has from their research and their studies and any place that they, you know, refer to, there's not one similar deletion that they know of that Camden has. - [Chris] I like to do parts of the interviews where I sit with the children and interact and become friends. Would it be better setting him up for success if it was just me and him, or if one of you two sat with us when we transitioned to that part? - I don't know, to be honest. I mean, we could try. If you wanted just to sit with him, we could try. And if you feel like that's not working out, I can sit or Ray can sit, so. - Hey, Camden. I'm really excited to spend some time with you today. My name's Chris. I came here to be your friend and make you laugh. (Chris screaming) (Cam laughing) I fell over. I hope it doesn't happen again. (Chris screaming) (Cam laughing) Oh my goodness, I fell over again. Let's hope it doesn't happen again, aw! (Cam laughing) Oh my goodness, I hope it doesn't happen again. (Cam laughing) - Cam will not play with toys. He does not like toys. He likes people. So people say, "What can I get him for his birthday? " I'm like, "Spend time with him. " That's really what he wants, right? (Cam laughing) - You got me! (Cam laughing) It's nice to meet you, Cam. - He thinks eight year old boy things are funny, right? You trip and fall, he will laugh at you, right? He wants to eat snacks, he likes to play, he likes to run. So, I don't know. I think for us, it's just like, we want people just to realize everyone's different and it's cool and everyone has a place. So, just let Cam be Cam and then that's really about it. (Cam laughing) - Hey, how are ya? (Chris blows raspberry) (hand slaps) (Chris screams) (Cam laughing) You got me. (Cam laughing) If you give me a high five, high... (groans) (Cam laughing) You knew what I was gonna say. - He goes through these

### Segment 3 (10:00 - 15:00) [10:00]

like you've seen the ups and downs of his emotions. One second he'll be crying and just sort of in a mood and then other times he's just crazy excited and just... So, the one thing Cam does, he hits with his hands, right? It's not a malicious thing, but he's either trying to get your attention or- - It's like a sensory input. stim thing, so he's hit us pretty good sometimes. So be aware of that if you're next to Cam. - [Chris] When Cam is cycling through his emotions from happy and laughing to kind of upset, do you know what is causing that cycling? - No, that's the part that can be a little frustrating is that sometimes we go, He's been changed, he's been fed, he's not tired. Why is he being grumpy or what is this feeling right now? But I think sometimes the feeling of when he gets kind of crying and just agitated, I think that's telling us that he's not, like he feels almost boxed in, right? So even in the interview earlier when we were holding him, I think he was like, I'm ready to move, right? I'm ready to jump, I need some stimulation. - [Chris] Is he frequently on the go? - Always on the go. But the way I tell people is I'm like, "Hey, he just has a hard time regulating his emotions, and within 30 seconds it can change. " So for us, we recognize that we need to say, if he's in that way, okay, let's maybe find a new room, maybe find new music, find a trampoline for him to jump on, you know, sort of just switch it up for him. And I think a lot of times it's that, like I said, he feels almost like confined or boxed in. - Hi. (Cam laughing) Hi. How are you? (Cam laughing) It's nice to meet you. Do you wanna see this? There you are. And there I am. You can see yourself. (Cam vocalizing) - [Ray] Are you being gentle hands? Gentle hands. You can hold your hands down- - Do you wanna hold hands? - [Ray] If you hold his hands down, he might give you some more eye contact. - Could you, for us? - Yeah, of course. Hey you, don't hit your new friends. I know it's endearment, but you don't wanna bop people. (Cam laughing) Was that so silly? Was that so silly all the falling? You think falls are funny? - You were saying something to the side there. Could you say that again? - I'm sorry, what part? Just like- - The holding his hand. - Oh, we encourage people to hold his hands... Buddy, to hold his hands down just so he gives better eye contact. And sometimes, because he's always moving. But he loves if we hold his hands down and look at him, he always gets nice and close to your face, but we'll give really good eye contact then. - And it kind of sounded like he said, "Hi," did I? Was that "Hi? " - Yeah, sometimes so he'll copy a first sound. - Hi. We always tell people it's totally fine to grab his hands and to hold him, touch him, just for their safety so he doesn't hit them. And also he just, he doesn't mind and he loves the physical contact. Actually, like the deep pressure is something he really loves. So weighted vests and arm weights and any like, any deep pressure and hugs and weighted blankets and all those things really help regulate him. - Yeah. - Are you so happy? - He loves the goofiness, the falling down. - Oh, loves it. We always say he's got like slapstick humor. The hits and falls and sounds and silly dancing. You love the chicken dance. - I know the "Chicken Dance. " - You like that? You love that song. You think he's so silly? Oh, goodness gracious. See, he's quick too. - So what is it like from your perspective when you see him doing that? Do you get anxious? - Yes, just sitting over there I just always want to jump in

### Segment 4 (15:00 - 20:00) [15:00]

because other people just meeting him don't feel comfortable maybe like grabbing his hands and so I'm always super anxious. If we, even when we're at family, like different houses with family and stuff like that, I still always, we're always right on top of him just to make sure he doesn't bop somebody or pull something off the table. - He doesn't talk, but people ask us, how does he communicate with you? And we're always like, you just kinda know. You know, spend a little bit of time with him and you'll figure it out. When he wants something to eat, he will just open the fridge and start pulling out condiment bottles and he's pulled out the eggs many a times and dropped them everywhere. But yeah, he communicates in his own way, but a lot of times, it's just, you can associate what's he doing, his attitude, time of day those sort of things, right? But yeah, he definitely has his own level of communication, but at the moment there's really no, there's no verbal, we don't do sign language with him. He can't do a, like buttons he can't do, he doesn't have any of that. - At school, he's starting to learn how to take Velcro pictures off and hand them, he loves music. So he'll go over to where the Alexa is and tap when he wants music - Yeah. - And loves TV, he loves music TV. - Even there when you just said music, he kind of clapped. Like that's sometimes an indicator of if he's- - Likes something. - Likes something or not. - He loves pizza so much that he'll... Yeah, pizza. (all laughing) He gets excited whenever we do pizza. - Is that the clapping? - Yeah. - Yeah, like if you walked in here with a pizza box, he would be like- - Or Dunkin' Donuts. - He would follow you to there. - Yeah, Dunkin' Donuts. - And he would be probably making some, "Oh, oh. " But yeah, it's interesting, yeah, because like I said, you just have to know him, and he communicates, it's just, you just have to know the signs. It was a really interesting thing, you know, because it's tough, what's going on in his head, right? And I think that the hardest part for us, as parents of Cam, or one of the hard things, is that we know it's in there, we know that he wants to communicate, we know that you can see it working, He just can't get it out. But we know that he's really aware of his surroundings. And when we used to drive to her mom's house, there was a turn that we'd go on. And then sometimes we'd either turn to go to her mom's house or go straight to do other errands and different things. And this was probably when he was like two or three. Like when he was really young. If we didn't turn on that turn, he would start bawling his eyes out. Because he knew when he went to Gram's house, you know, he would get a lot of food and, you know, fun things and he would associate that with good. So, yeah, so that part of his communication is just, it's not there, but it's there, you know, we understand him in a lot of ways. - Well, we always say it goes through ebbs and flows. Sometimes he will be more like, hitty than other times. Sometimes he's really, just wants to chew. but lately he's definitely been in a mode where he's hitting more often. So we're really trying to negate that behavior by like holding his hands down or saying, "soft hands" or he's trying to bite his wrist, but he's also, that gets my hand away so he can be free because he wants to, you just wanna be silly and jump around, don't ya? Oh, you know what? I did take off his chewy necklace. Let me grab one. - Yeah, go ahead. - Yeah, but definitely he's used to that, grabbing hands. - Hey, Cam. Whoa! - We have these everywhere. But it's just- - What are the chewies for? - He is so oral, like has that oral- - Fixation. Oh, that's my fault, I let go. Hey. - Hi, Cam. - You're so rammy right now. Why don't you grab your chewy? You wanna grab your chewy? There you go. (chuckles) - Hi. It's so nice to meet you. I'm having fun with you. I like that you like my silly jokes. - Yeah. - It's really nice to meet you. - He'll lean his head on people when he's close with them and it's always like we think it's his way of being comfortable with somebody is when he leans in nice and close

### Segment 5 (20:00 - 25:00) [20:00]

and will lean his head on... Hey, you're just being so silly. - I got you wound up with all my falling over. - Oh, you're falling. Hey. - It's nice to meet you. - For a while, he used to bite his skin and we don't think he has the immediate feeling like the sensory input has a delay to his brain so he would puncture his skin and not even feel it. - Would it hurt him eventually? - I think eventually, but it took like, it was like a delayed reaction so he would break the skin sometimes so we would put wristbands on him and things and we'd hope that it would detract him from biting, but sometimes having the fabric on there made it more enticing to chew. - Does he bite others? - Sometimes, but the bopping is way more prevalent. He'll do this little thing too, where he'll take the tiniest bit of skin and pinch. And typically, it's like on the worst part. It's like behind your arm. And like the worst times, you'll go, oh, geez louise, you just, you're quick. You're getting so fast. - Yeah, if you've been around Cam enough, you're gonna get bopped. Clearly said, "Cam's gonna bop you, so be careful. " But that is a concern for us as he gets older, obviously, because now it's, you know, sometimes it's cute, sometimes it's funny, but obviously that is a concern of social situations, different things, especially as he gets older and stronger. You know, it's something that we're working on with different techniques and different things like that. But I think some of that's also just putting him in the right situation so he can't do those things. It really just depends on the situation. And so I think sometimes for us, like we try to do our best to not bring him or to situations where like, it just won't work for him, right? Like certain really loud things might not be best. So like, we're not, we try to be respectful of like the situation, but then also it is great when he fits into the situation just like kind of naturally. - [Chris] Tell me about the level of caregiving that Cam requires. - So Cam requires 24/7 care. You know, 24/7 care. He doesn't know how to use a bathroom. So he's, you know, constantly getting changed diapers. We have to feed him. He can eat if we put food in front of him, which is really great. But yeah, it's a 24/7 care. The hardest thing for us, or at least for me, as the man, is what's gonna happen when we're gone, right? You know, because he's gonna need 24/7 care and not being able to speak, communicate of his needs, and then also just, you know, there's- - Always being in diapers. diapers, and he just can't defend himself, right, so he's super vulnerable. And you know, we trust people, but then also you have to just be careful. You just never know, right, with situations. So like part of my big thing is like, I need to be physically fit. healthy so that I can be 80 years old and still helping him, right? So I take that as like a huge, I don't wanna say like mission, but a huge commitment to my life to say, hey, I'm going to do everything in my power to be as healthy and strong as possible and have everything set up for Cam, whether that's, you know, funding for medical needs, housing, all those sort of things, as he gets older. - A lot of people have said to us, "Oh, I'm so sorry, is he okay? " And I'm like, "Yeah, he's great. " Like he- - He's probably doing better than you, you know, a lot of ways, so. - He's doing fantastic. And there's nothing, I just, I, at first, I think there's a whole learning curve to having a child with special needs. You kind of go through, I guess it's like the grieving process, but then you learn like all of the moments that you celebrate. All the wins, all the milestones, all the achievements. And it's not anything to be pitied. It's just something that we love that's, you know, unique to us and our family. And we hope that him and his story will help our daughters be empathetic and loving and inclusive with other children. Our five-year-old, when she sees other kids

### Segment 6 (25:00 - 30:00) [25:00]

that have chewy necklaces, She always will say hi and be like, oh, he's like Cam. And like just things like that to, yeah. Okay. - [Christ] How many children do you have total? - So there's three of you. There's Cam, Collins and Lyle. - How old's Lyle? - Two. - What do you think Lyle thinks of Cam? - Do you think she thinks he's funny sometimes? - Yeah. - What do you think of Cam? Does he ever steal your food? - Sometimes. - Yeah. So at the beach, what does he remind you of? Remember you called him this animal? - A seagull. - Why is Cam like a seagull? - Because he eats all our food. - Yeah, he'll steal your food and run away with it, right? - Yeah. - One day we were at the beach and we said, "These seagulls, they just steal our food and run away. " She goes, "That's, Cam's like a seagull. " - We have learned that going out to eat and doing normal things is not so easy. So we don't do those things a lot. Like, we've only really traveled twice on an airplane with him. And we don't, we maybe go out to eat like a couple times a year? - [Chris] What was traveling on an airplane like? - Well, the big issue with us is what if he goes to the bathroom, right, because there's no changing tables and so. - For an eight year old. - While we're trying to keep it lighthearted it is, it is a concern, it is really tough for families, you know, with kids like him, because, you know, if there is an issue, the planes are just not set up for that, right? - [Chris] What is it like educating your daughters about Cam? - I think because they're younger than him and that's all they've ever known, they don't notice it as being different until they're a little bit older. I think sometimes it's hard because we can't do all the things that other families can do. So that's sometimes hard, like the going out to eat being a favorite thing. Whereas a lot of times for other people, it's just a normal, you know, weekend activity. But I think too just trying to teach him that there's nothing wrong with being different and that you can meet him where he's at and love him in certain ways that, you know, by dancing together or just, you know, just acknowledging him, telling him you love him, reading books together. You guys always read books together. - I never thought I'd have a kid with special needs. You know, I never had experience with any of these conditions or anything like that. But I think there's that weird juxtaposition of, like, if someone could flip a switch and be like, "Hey, if you could get rid of all of Cam's conditions today, "would you? " Like, yes, but then also it's like, I wouldn't wanna change who Cam is. So there's sort of that, I don't even know how you define that, that weird feeling of like, I want him to be fully capable. And like I said, I would flip the switch, but then at the same time, it's like, who he is, is like, is also amazing. So I kind of fight between that. One of the hardest parts is like, you know, we've talked about that, like, you know, if Cam didn't have his disabilities, like what would he be like, right? And I think those are some of the things that are, If you dwell on it, it's really hard, because it's like, what would his voice have been like? What would he have been? What would his career have been? Who would he have married, right? Would he have done this? So when you think of it like that, you know, it can be tough, but I think that's not how we chose to look at it. You know, we choose to look at it that, you know, we believe that God made him a certain way, and he views the world in a different way, and he adds value to the world in a different way. And that might be to help us slow down, to see that life is not just about making money, doing, you know, vacations and this and that, but it's really about family, you know, quality time with each other, and learning how to love people when they can't offer you anything back, right? Like, in return, right? So Cam will never have a job. He'll never be able to live independently, you know, he won't ever have, you know, a quote-unquote, like "economic value," right? But I think he's taught us so much of like

### Segment 7 (30:00 - 30:00) [30:00]

what's the most important things in life. When he smiles at you, you know, and when he's having fun and enjoying life, that's really what is the most amazing thing. - [Chris] Thanks for watching SBSK! Click subscribe here to be part of our community. Then hit the notification bell below so you never miss a story. You can even meet another friend here. See you next time!