# She’s Never Had a Friend in Her Life

## Метаданные

- **Канал:** Special Books by Special Kids
- **YouTube:** https://www.youtube.com/watch?v=MlSHPlBCipU
- **Дата:** 09.04.2026
- **Длительность:** 29:41
- **Просмотры:** 148,486
- **Источник:** https://ekstraktznaniy.ru/video/48360

## Описание

Support SBSK and help us continue sharing stories like this:   / sbsk  

On’i was born with Crouzon syndrome, a rare genetic condition that affects the shape of her skull and face. Growing up, other children didn’t understand her. They would run from her and sometimes even throw things at her. Today, On’i’s challenges aren’t just social, but within the healthcare system as well. She often struggles to get insurance to approve the medical supplies she needs. 

Despite everything she has endured, On’i remains kind, open, and hopeful. She shared with me that she has never had a friend and deeply wants to experience that kind of connection.

## Транскрипт

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

- [Chris] When somebody sees you for the first time, what do you want them to know? - I want them to know that I'm very genuine. I'm very nice. I stay more to myself, but I like to talk more about my story. But I don't really think people be willing to hear like, about a medical situation. I just feel like the world just don't wanna hear my health issues because that's all I can bring. 'Cause I don't have nothing else. I never got to play sports. I never got to, you know, be in a band. I never got to run track. I never got to be a football player or a cheerleader. I never really got to be that stuff because of the pain that I go through every single day. I do be wishing it sometime, I'm like, "Dang, I wish I could be a cheerleader," or "I wish I could play an instrument. " But it's just I deal with a lot of physical pain. So I just think people don't wanna hear that all the time. I just hope that I don't be a burden to people. Like I just stop them from what they're doing or what they're trying to achieve. - [Chris] Do you feel like a burden sometimes? - Sometimes when I talk to people, because I feel like I stop what they have going on. - [Chris] Do you feel like you're worthy of friendship? - Sometimes. - [Chris] What are some of your best memories growing up? - Just playing with kids even though they were running from me. I hope that people care about me more than what they show. - How old are you? - I'm 23. - [Chris] Do you wish you had more or genuine relationships? - Yes. - [Chris] We don't have to share exactly where you live, but is it okay if I say that you're near Atlanta? - Yes. - [Chris] And that if people live near Atlanta, maybe they could reach out to you. - Yeah, I would love that. - [Chris] Alright, so say somebody about your age is in Atlanta and they wanna be friends with you, what would you wanna do with them? - Hang out with them. I love to eat. I love to eat food. I love to do Legos. I love to just have a conversation. (bright music) - [Chris] 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. - I used to not have a lot of friends so people would like run from me, pick on me, bully me. So I didn't realize, like I didn't really have a social side till I got older. So it's like I have like one or two friends but I talk to them online, not physically. - [Chris] So now you have one or two friends online? - Yeah, online, not in person. So we're like, they can't come over here and stuff. - [Chris] What is it like to not have friends in person? - I feel lonely sometimes, but I try to like talk myself out of it. Like to distract myself from, you know like, I talk to myself a lot. So I have an imaginary friend that I talk to. - [Chris] Did you give your imaginary friend a name? - No, I didn't. - [Chris] Why not? - She's like a... I just pretend like I have a twin. Like I look at myself in the mirror and be like, "Yes, you go right there, you know? " - [Chris] Is it nice to imagine you have somebody nearby? - It does. It helps me a lot with coping. Like when I go to doctor's appointments and stuff and I feel sad. - [Chris] It sounds like the imaginary friend brings you comfort. Do you wish it was a real person though? - Yes, because I would love to hear the conversations. - [Chris] Is it okay if I sit beside you? - Yes. - All right, there we are. On camera. - Yeah. - What is it like to see yourself? - It feels good. I feel a little nervous but I'm okay. - What is making you nervous about the interview? - I'm still stuck on the fact that you're real. - You're used to watching me on a phone or something? - Yeah. It feels nervous but excited. - Well, you're doing amazing. I'm having a great time getting to know you. And I'm happy we get to do this interview today. - Yes, thank you. - What is it like for you to have a friend who you can have a conversation with in person? - It would make me feel good. I would like to have somebody to talk to other than just my mom 'cause it's just me and her.

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

- Do you talk to her a lot? - Yeah. - [Chris] Tell me all about your mom. - She's my mom. A great person. Just a very comforting person. Very understanding. - [Chris] What is it like being On'i's mom? - It's wonderful. She has taught me a lot of patience. I think she's changed me for a better person. - Talk about like my medical issues and like how we deal with what's going on now. - Well, sometimes when she's hurting or when she's going through something really bad, it bothers me a lot because I feel the pain that she's going through. But I try to do the best that I can with what we have to make her comfortable. - [Chris] What is your diagnosis? - Crouzon syndrome is a genetic disorder I got from my father's side. - [Chris] What is Crouzon syndrome? - It makes my arms different. My arms doesn't bend straight out like everybody else. My eyes used to be out like of my head. - Crouzon syndrome is when your brain, your skull is mounted together and like, you know, like when you're a child, you're born with a soft spot. So it takes for like when you become a teenager it grows and it gives your brain room to grow. Well, her skull was already mounted together so they had to break open, break her skull loose to give it room for her brain to grow. So she's had that done like a couple of times, a lot. The first one is she's first started being born - And it's crazy because the things that I would get bullied about, it's like not only the bullying affect me, but it's like I have issues with, not saying I have issues with the way I look, but I have health issues on top of what they're talking about. - Because Crouzon syndrome comes with a lot of other things that people don't know about. - Yeah. - As far as your hearing. bone structure in your mouth. nose. - I fell, 'cause my arm, it doesn't straighten. - Yeah, like our arms bend like this, hers stay like this. So she had fractures in her bones. - Yes, I have fractures in my toes too. - Yes. - [Chris] With the skull surgeries, would they have to break the skull and reshape it? - Yeah. - Let the brain grow a little bit and then do it over again? - Yeah. - [Chris] All throughout her childhood? - Yeah. So the first time they did her forehead, broke her skull in her forehead and we did, I think we did that one like twice. And then they did, they did everything up in here in her head. They broke it open and I can't remember how many craniofacial surgery she had, but it was a lot. It was me and her a lot of times in there. But she didn't get it done to the back, and that's why I think maybe the fluid started leaking from her brain and she developed hydrocephalus here so that's why she has a shunt. - I have like a shunt to where the fluid from my brain it will leak into a tube so I can like pee it out 'cause it will cause like a flare up and like my headaches that I have, it makes it a lot worse. So it's like I have to like be in a dark setting. I have to close the windows. - Does Crouzon syndrome impact you cognitively at all? - Yes. - How? - Because I'm not able to do things for myself. I need help with cooking, cleaning. I have to be reminded take my medication. - [Chris] What is your biggest hope for On'i? - Oh, wow. I wish that On'i could just, I wish she could just function and be independent and learn how to manage some things on her own. But it's hard 'cause On'i has a hard time remembering things, very hard time. - Like I was cooking for myself and I started fire in the oven. - Yeah, she started a fire. - And I panicked. - And she panicked really bad. And I was only going for like an hour or two, so that was kind of bad. So she has panic attacks and I think that if she was more around other people

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

with other different situations, you know, instead of just being with me all the time, that she would learn different things and do different things and go, you know, just how to get along different with other people. - Do you enjoy having these conversations about your health? - I do because I feel like I have a listener and don't have to talk their head off. - Well, you can talk my head off. I enjoy listening. - Yeah. - It's scary trying to be an adult with disabled, having disabled things going on with you and trying to make adult decisions is very scary. - Yeah. - For her. And like trying to remember certain things 'cause she can't remember a lot of things and she can't... It's hard for her to, like if she opens the mayonnaise jar and she makes her a sandwich, she'll forget that she opened the mayonnaise jar and she'll just walk off with a made sandwich. And I know that sounds crazy but it's like she actually forgets and she doesn't mean to but she does. So I have to say, "Baby, did you go, you know, do this? " Or you know, sometimes she'll forget to flush the toilet even at her age and I have to tell her to go back, you know. I still told her at her age now to pull your clothes up, you know, 'cause she has no feeling. So I have to remind her to pull her clothes up. And now that we've got her approved for MARTA Mobility, I'm nervous about putting her on there because I'm scared she may not remember where she's supposed to go or be. But I think she, if I write it down, I think she'll be okay. I just, yeah, It's just everything is new to her so I think she's developmentally delayed by three years so she's always been developmentally delayed by a couple years. So I just think it's gonna take some time and some help, and yeah. - [Chris] Were you always forgetful or did that happen after a surgery? - Always. - With the surgeries that she's had, like she used to know her multiplications and stuff like that. But when they started doing so much craniofacial surgery with cutting in her head, she didn't remember her timetables anymore. - It's like I would have, like I had a tutor at my last school and I forgot everything after I had that situation where when I passed out. - Yeah - I forgot everything. - She couldn't remember. And that's a really, yeah that's a hard thing 'cause she can't remember to do things, certain things. - And my teacher, she would tell me, she'd be like, "You know. It's just you don't wanna put the wrong answer. You have to have more consistency with yourself to know like you are not always wrong. " - And like in her room I have a big pink poster board that reminds her of things that she needs to do. Like when she wakes up in the morning and I remind to take your medicine, remind to do your puffs, remind to drink some orange juice, remind that if you get a headache, make sure you go see your Benadryl. If you forget to take your medicine at nighttime, On'i, look on this board and know that you need to take your medicine at nighttime. 'Cause sometimes she'll get in so much pain to where she just doesn't wanna do it, and so I have to tell her we have to keep going. - [Chris] On'i, the teachers told you that you did know the answer but you just weren't confident enough. - Yeah. - [Chris] But you actually didn't remember. What was it like for them telling you that you did know, you just weren't confident? - I wish I did know. - [Chris] Back when you were younger in school and you were experiencing that bullying, did you tell the teachers? - The teachers, yes, I did. But I've had a lot of, they wasn't doing anything. I had a lot of assault situations, people throwing trays at me, chairs at me, people throwing erasers and stuff at me. And it's just like the teachers weren't really being a teacher. - [Chris] How would you describe the impact going through that when you were younger had on you? - I'm very closed and I rage. It's just very, I closed myself in my room. - Are you done with the surgeries now? Is the brain now... - We are praying because, we are praying, we are praying that no more surgeries, no more. because we didn't expect the chiari malformation surgery.

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

But we didn't know she started having headaches and we didn't know when we went to go see her doctor, the bone doctor is the one that discovered it. -The orthopedist. -Yeah, he told her not to go and have an MRI done 'cause she was complaining of a lot of pain here and she had that pain for a year. For a year and we still didn't know. And I didn't know my baby could have died. - [Chris] What is the chiari malformation? - Yeah. Yes. When you have that fluid leaking from your brain down your spine and your back. She still has a lot of headaches and stuff from that surgery. - I take a headache pill every night but I still suffer during the day. So it's like I have to like distract myself from thinking that I'm in pain because when I used to face my pain I would be enraged. I would like, I would put holes in the wall, I would throw stuff, and I will cry a lot. I have a lot of letters here from my doctors because it just states like what I go through as far as my health and how much medicine and stuff I have to take. But my insurance won't seem to understand that. They just have me listed as asthma. - [Chris] So your insurance won't cover the things you need? - No. - [Chris] That's horrible. - Yes. Very horrible. - [Chris] Does that mean you're not getting the medications you need? - Yes. Like I've been denied for a daytime headache medicine. Like as many times I tried, like three times. - [Chris] How bad are your headaches? - My headaches are very bad. - [Chris] How would you describe the pain? - I get dizzy, nauseous. Can't see. Can't eat for three days. I can't really move my body around. I have to constantly wear cotton balls in my ears. I'm usually a eater but I can't eat the foods that I want to because I have to sit in pain and be in a dark room. - What does it feel like when insurance denies your claim? - I feel like they just gave up on me, like this was the end. - Oh, I'm sorry. - Yeah. - I hate the system we have. - Yes, I do too. - I think we need to tear it down and start anew. - Yes - Where everyone can get the care they need. - Yes. I feel like people only understood my health when I had the trach and the G-tube. So sometime I be wanting it back sometime because I be thinking like, the only way they'll understand me is if I'm severe. I don't look so like I need help now. So sometime I beat myself up because I wanted this, but it's like I wanted people to still understand me because of how I look now that I still go through things like I did back then. - [Chris] Do you have a lot of struggles that are invisible? - Yes. - [Chris] Do people assume that you can do most things they can do? - Yes, and that's what I have a very hard time with. They don't believe that, you know, I go through like my leg pain and hip pain and headaches every day and my toe swells up a lot. I get very fatigued and tired. Sometimes I just be wanting to give up. - What do the doctors say when you tell them that? - They would pretend like they care in my face but don't really do anything. - It makes me so upset hearing that so many people in our country don't get the medical care that they need. - Yes, and I be trying to remind myself that I'm not the only one going through it, but it's like I'm different. So the things that y'all go through on a daily basis, I go through way more painful than that. Way more pain. - When they deny your claims, do they tell you why? - No. - It just says denied? - Yeah. - Not even an explanation. - [Chris] She was telling me how insurance keeps denying the claims. - Yeah, we have a lot of that going on. They deny her therapy, her dental

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

some of her dental work. - I had to reach out to a charity for my hearing aids. - For her hearing aids. It's very bad. She needs her hearing aids and it's hard for us to find someone to help us. - Sometimes I can't wear my hearing aids due to how much pain I be in. - Yeah, she's having these ear pains constantly. But every time we go to the doctor they can never tell us why she's having these ear pains. So that's a big problem 'cause we are taking a lot of Benadryl and things like that to help with the ear pains. But it's constant and her headaches are constant. - So it's like when I have my headaches, that causes my ear pain to be worse. - Yeah, yeah. So I have to try to get her to relax and not really think about anything during that time. Just get her to relax. And she has medicine that she takes for her headaches and stuff at night, but it makes her really drowsy and sleepy. So I have to make sure I give it to her at a certain time at night so she can sleep comfortable. But like during the day she's taking like Tylenol or ibuprofen or something like that and a lot of Benadryl. - To really be honest, I wrote some things down. - Do you wanna read them? - And I have some more stuff that I want to talk about, but I know we can't fit it all in two hours. - I would love to hear some of the stuff you wrote down. - Okay. - Where is it? Right here? - It's in my phone. - Yeah, go ahead. Feel free to share anything you want. - You know, I think about sometime, I think about not finishing school a lot. And to really be honest that kind of, I know God wanted different but I wish I could do some of the things that I want to do and it didn't take me so long. - [Chris] Do you often go out into public? - Yes, I go to school and I go to therapy and if I have doctor's appointments I go to those. - [Chris] What are you studying? - I'm getting my GED. - Congratulations. - Thank you. I became very depressed in my childhood because there was goals that I wanted to complete at a specific age and I couldn't. I was going through a lot of surgeries so it was very hard for me to complete my school work because I would forget a lot of things. - What are you most looking forward to in the future? - I'm looking forward to finishing school, and start my audiologist career. - Oh, why do you wanna do that? - Because I wear hearing aids and I love the colors and the hearing tests and the fitting and stuff. - How long have you wanted to be an audiologist? - Since I was younger. - I love that you're working towards that. - Yes. - Tell me about your hearing aids. - My hearing aids, I'm going through a thing right now where my insurance refused to cover them so I have to go through like programs after programs because they just, it's just, as far as the whole medical situation, I hate it that they look at it as I'm pretending. - That's what they tell you. That's so messed up. How often do you experience headaches that hurt at a level of 10? - A lot. I experience, I've had headaches for a total of six years now, so I ignore it 'cause I used to, I used to like rage, so have to like cry a lot or crash out a lot or like, I don't bang my head against the wall or nothing. But I just like, I destroy things because I don't have nobody, I can just call and be like, I'm suffering with this or I'm suffering with that. - What did you think when On'i told you that she reached out for an interview? - I was nervous at first. I was like, "No, On'i, I am scared. " You know, I don't know what to say. What are we gonna do? But as she showed me the videos and discussions on what other people had with you and she talked to me about how comfortable that she would feel talking to you because she's been looking for years. Like this didn't just start, we were living in another place, over in another place. So we moved over here in 2017 or '18.

### Segment 6 (25:00 - 29:00) [25:00]

So she's been watching you for years and she's like, "Mom, I'm ready now. I'm ready," she said. "Are you ready? " I said, "Okay, we're ready. " But I was just kind of nervous because, you know, no one's ever really cared about what was going on with us. I've never had an advocate or a social worker or anything like that. I've always done everything myself and I've asked and I've needed help and I've pulled my hair out a lot of times. - And as far as what really, really bothered me was when I burnt my butt for trying to use a ice pack because I was in so much pain. - She has no feeling back there. So she sat the ice back there for too long and didn't realize that she was supposed to remove it and I think she kind of like forgot that it was back there 'cause she has no feeling and she really burnt herself really bad. Really bad, so she couldn't sit down for like two months. - [Chris] Where do you have no feeling? - I have no feeling around my hips and the front of my legs. - Why is that? - From the surgery. - From the surgeries of how numb I am. - She actually has no feeling in her lips as well. - I don't either. - Because she had the jaw surgery. So when she puts on her lip gloss and stuff like that, she has no feeling, so she has to really look in the mirror to make sure, but she'll all over the place 'cause she doesn't feel her lips. - Having no feeling is not really fun. - And by her having that, she was born with that tailbone and after they cut the tailbone off, it's no feeling back there. So she has no feeling in her tailbone area. And that's what she has a lot of pain. - [Chris] What is a tailbone? - Her rear end, her buttocks area. - [Chris] But there was a tailbone that stuck out? - Yeah, out and the doctor cut it off, like maybe a week after she was born. Maybe a week, yeah. - [Chris] What's it like to hear all these things you've been through? - Now, it makes me sad due to the help that I don't have. - [Chris] Do you have fear today of reaching out to people because of the way children treated you when you were younger? - Not really. Like, not my adult self because I'm very protective of myself now. - [Chris] How are you protective of yourself? - So like I try to like get them before they get me, if that makes sense. Like I know what they gonna do, so I just be like, "No, I can't talk to this person. " - [Chris] You assume that everybody is gonna be rude? - Yeah. - [Chris] What is it like going through life believing everybody will be rude or mean? - It's a lot. It's a lot because they're just using me and just picking on me and stuff. - What can other people do to let you know that they appreciate you and they want to be around you? - Just give me a chance. Like just walk up to me or, you know, 'cause I'm very funny so I'm not like a type of person that'll be like, oh, like I don't want this person around me and stuff. Like, I want them to know that, you know, I'm very friendly. I'm very nice. I'm very genuine. You know what I mean? Like I'm very... I'm a great person. - [Chris] How often do people come up and talk to you? - Not very often. And I be thinking because like, they'll say something to my mom, but they won't say something to me. - What would they say to your mom? - They'll be like, "Oh well, she's pretty. " And like I be standing next to them and they'll still be talking to my mom, but I'll be hoping they talk to me more. - I appreciate you reaching out to me and inviting me over. - Yes. - To interview you. You've done amazing. - Thank you. - You're welcome. - 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.