Meet 8 Of The Rarest People In The World | BORN DIFFERENT

Added: 2026-05-09

[00:00:00]On the outside, I look like a typical woman. On the inside, you can see that I definitely am not. I have two uteruses and one ovary. Most people have a rectum. I don't actually have one of those.

[00:00:12]>> I was born with mirror syndrome. My condition is super rare. Before I know, there are only three known countries in the world.

[00:00:23]>> A dentist drilled my tooth and now I'm one in a trillion. and my ultra rare condition makes my face swell and change shape.

[00:00:33]>> I was born with oric musculardrophe and I'm the only one in South Carolina with my disease. At the time of my diagnosis, I was the number 96 in the whole world to have it.

[00:00:41]>> My condition called NDP syndrome is only known to affect me and 15 other people worldwide.

[00:00:50]>> I'm not drunk. I have a rare condition.

[00:00:53]I am gradually losing control of my muscles over time. My rare condition means I love everyone. William syndrome is a super rare genetic condition characterized by cognitive and developmental issues and highly social personalities.

[00:01:11]>> I'm the oldest person in the world.

[00:01:14]They said that I was going to die at the age of two.

[00:01:18]>> Christopher was diagnosed with dysplasia type 2. It means deathbearing. The condition in it of itself already has its death sentence with it.

[00:01:28]>> Vual association is an acronym that stands for vertebral, anal, cardiac, tracheal, esophageal, and renal and limb abnormalities that affects 1 in 10,000 to 1 in 40,000 births. Each abnormality has affected me in a different way. So for the V for vertebral I have had hemi vertebrae which is partially formed vertebrae an extra lumbar vertebrae which has made me extra tall um congenital scoliosis which is curvature of my spine but I've had sacral genenesis which is missing bones in the base of my spine and that unfortunately has led to some missing nerves in my um pelvis but I was actually born with a cloaka which is one single opening. So, I had my urethra, two vaginas, and my colon all coming into that one single opening. I actually can't have any indication of when I need to go to the bathroom. I was born with a hole in my heart. Um, so this was able to heal without any surgical intervention, thankfully.

[00:02:30]I was first told about Anna's condition when I was 28 weeks pregnant and the midwife saw that I was growing faster than I should and that's always a worrying sign apparently. Um and so she asked if I'd have a an ultrasound. So I went to have an ultrasound straight away and um they couldn't find Anna's stomach. I thought, "Wow, that's pretty heavy." I thought, you know, the baby was going to die and they said, "Look, we've got somebody really good here who's a specialist in these sorts of things and he's on duty tomorrow." So, he identified immediately that she had vectoral association. She was taken over to surgery and went through about 5 hours of surgery on that very first day of life. And um for me as a mother, it was very difficult um to have your child whisked away. They joined my food pipe to my stomach. They um disconnected it from my air pipe and that's when they actually um made my colostomy and my vesicostomy so I could get waste out of my body. Without this surgery, I basically would have died immediately and would have had no chance at survival. I had um my reconstruction at 7 months. They cut from front to back and made all three pelvic openings. Um and then shortly after that, I had my colostomy and my vessicosttomy. those bags for the bowel and bladder. Um, I had them reversed so I could actually start to function um out of my pelvic openings.

[00:04:02]>> We had, I think, 50 admissions to hospital in those first four years of life. Every time she went in for surgery, I would panic until I heard she was out.

[00:04:15]All of these surgeries that I had as a child had such a significant impact on me now because it meant that the chances of me having abdominal surgery for anything made it so high risk. I met this absolutely incredible surgeon. He went in and divided all of those adhesions and removed this growth by at this stage it was 10 by 13 cm. Moving forward to 2020 I had another surgery upon duplication. This is a surgery that they do for reflux. So, I've always had really bad reflux since I was a child.

[00:04:46]Unfortunately, in this time, I lost um quite a significant amount of weight.

[00:04:50]Now, I basically just eat everything orally um and I'm just trying to eat as much as I possibly can so I can get that weight gain. I remember when she was little, I said, "You feel bad that you you can't do a lot of things." and she said, "Look, I can't wait until I'm well to do things, so I just have to get on and do them." And I thought, "Wow, that's an amazing attitude." She's like seven or eight years old, and she'd already decided that she just had to get on and have a life because she couldn't wait.

[00:05:23]>> I first decided I wanted to get into modeling when I was about 14 or 15. And I yeah, I just saw that there was so much potential to represent my community. It was definitely difficult because my scars put up like an incredible barrier. I was first told that I was never going to be able to model to show my stomach with my scars and I was able to work really, really hard and persist and I was able to get to, you know, Amsterdam Fashion Week within a year of getting my first modeling contract. I've had some incidences unfortunately where I've actually passed out at shoots and really struggled. And that really had nothing to do with the fact that I was modeling, but more to do with the fact that I was running myself into the ground because I was pushing my body too far.

[00:06:11]You've always been by my side throughout all of it. You know, you've you've lived it with me. You really have. And it's like I would not know what to do without you. And I absolutely dedicate so much of that support to my mom. She taught me so much and especially, you know, about resilience and about, you know, my condition and that it was not something to be ashamed of. It was not some sad story. I felt equipped to transform, you know, a pretty crafty set of circumstances at times into something that is a really strong purpose in my life to drive forward, you know, positive change in the system from my lived experience.

[00:06:55]I started Champion Health Agency in May 2021. Champion Health Agency is a talent agency for lived experience that is impacting change across all sectors. At the moment, we represent 28 people. Most of them are in Australia and we've got one person in New Zealand and one person in England. They've all got such diverse and impactful stories. I was thinking about calling it, you know, like the health agency or the patient agency or something. Um, and Champion kind of came just stood out. We need to transform the way that we think of champions and think of champions as the people that make true change in our society. And I think that really should be people with lived experience. You can actually have a really successful and fulfilling life and you know have a huge impact on many other people's lives and that you have a significant place in society whether you have a disability or not.

[00:07:56]I have always been into dancing, but I just haven't found the right studio that I felt comfortable in. So, I was scrolling on TikTok one day and I saw Rick. I just love like everything about him. His environment, his attitude, the way he runs his class is just amazing.

[00:08:19]I've been doing it for going on 3 months now and I haven't stopped. I've been dancing constantly ever since I started.

[00:08:29]I was very nervous putting myself out there. I didn't know how people were going to react to me physically. They were like, "Well, she can't do this. She can't do that."

[00:08:40]>> Hips and throw. Head, head, cross, cross, open, open, scoop. It does take a certain amount of courage to show up for any dance class, to risk making mistakes, and to stand in front of a room and say, "Here I am just trying as best as I can." Ashley's body is built differently, so she's obviously going to have a different sense of balance.

[00:09:01]>> Knee turn.

[00:09:02]>> But as she gains balance and gains her own footing, she's able to make the moves more of her own every single time that she executes.

[00:09:11]>> Sweet. Hell yeah.

[00:09:13]>> Got it.

[00:09:24]Nature syndrome is a cranial facial deformity in the face, arms, and hands.

[00:09:30]And there's only few and 100 in the world. My arms are short, so there are things I cannot do for myself.

[00:09:40]I had to learn from uh figuring out ways to make good work for myself. My life could reach one time. I would have to stand to school.

[00:09:55]I just had to learn something from outside the box on how to adapt to the outside world.

[00:10:02]When I was born, I didn't really have a jaw. So, they had to take bone from different parts of my brain in my head and they implanted my wall and then just extracted it to make it more outward. And then I had surgery on my toes cuz I didn't have any tooth bones. Then I had to implant those. And I had other sensory sof and then I had some in my hands where I took both of my index fingers and I rotated them into my it was um challenging because I was the only one who had so a lot of ups and downs for school people making fun call me names like T-Rex Um, and then really really bad like I was trying to just had a hard time but I didn't let it affect my schooling. growing up in any world looked a little bit tricky. There were a lot of times where people wouldn't really give me the chance to like get to know me or get to know them.

[00:11:23]And it just kind of hurt because it felt like they were judging me for how I look rather than trying to get to know who I am as a person. So that was a little tough.

[00:11:39]>> Mhm.

[00:11:40]>> Oh, worrying for your hair now. Yeah.

[00:11:42]>> Okay.

[00:11:43]>> Me and Matt met online 14 years ago. We were best friends for a very long time and then in 2019 we officially met in person for the first time and then we've been ever since.

[00:12:00]>> Thank you.

[00:12:01]>> Beautiful.

[00:12:02]>> Thank you.

[00:12:03]>> He didn't really treat me like I was different.

[00:12:07]He treated me like a human being to treat someone else. And that's what really got me attracted to Matt because he was so different from the other thing I had. He literally picked me as a whole person. He helped me with all kinds of stuff. I mean, he'll help me with everything if he can.

[00:12:30]>> I help Ashley with her hair, putting on her top if she needs help with her top.

[00:12:35]just basic things that would require extension and height.

[00:12:41]>> Sometimes like the more physical aspect of it. I feel bad for having to ask him to help me all the time. But he doesn't seem to mind it. So it makes me feel better that I have someone like him cuz mad if I have to have help.

[00:13:00]>> Everybody needs help in life.

[00:13:01]>> That's true. It feels amazing to know that I have a significant other who supports me and what I want to do and I support him. So, we're like partnering tribe if you want to call it that. Matt is my life.

[00:13:24]He's very important.

[00:13:27]>> Uh, you want crushed ice or rice?

[00:13:29]>> Uh, crushed.

[00:13:30]>> Crushed ice is Got the big old fancy pores.

[00:13:38]>> Yeah.

[00:13:40]>> Saloon.

[00:13:40]>> Saloon.

[00:13:43]>> There are times where me doing something or I'm doing something and I say people.

[00:13:52]>> It gets me really frustrated. Uh there's definitely times that she has to uh hold me back because if we're like at a grocery store and someone is just looking at her for no reason trying to judge her, I just ask if they got a staring problem or do we need to like, you know, go have a talk somewhere.

[00:14:12]So I don't like it at all.

[00:14:15]>> Comments or anything like that? It's mainly like on social media where people want to make inappropriate comments and I don't really let it get to me like I don't I don't in that type of environment so I just kind of shrug it off and let it go.

[00:14:38]People with physical disabilities can also do things even if it's adapted a different way to make the dance move happen. I feel like I'm on my way dancing. I don't feel nothing and I feel freedom. I feel the music. I don't feel nothing but music and dancing.

[00:15:02]>> I love when Ashley posts her dance routines on social media. I know she gets an outstanding response every single time, but what I love most about it is that she's continuing to take away excuses where other people come up with syndromes for themsel and say, "I have two left feet. I can't dance." Ashley's standing up here with Negger syndrome and is doing it. She's executing the moves despite what limitations her body might give her. And by doing that, she's inspiring other people that are just like her, other people that have bodies that are different than her, and people that might be self-conscious to show up for their first class.

[00:15:43]>> I feel like I I needed to do that to show people, hey, this girl can really syn.

[00:15:54]And that's that's the main reason why I do like the fact that I was born different. just because it's brought out so much confidence in me, I guess you would say, and now it's just like a complete screen. I feel really unique when I know that there's less than 100 people that have my condition, then it just means that we're special, that we're one of a kind. And I kind of like that.

[00:16:29]I always start off my day with a facial massage. That's the FD, the fibrous dysplasia, >> which is bone.

[00:16:37]>> It is. It is bone. The name of my condition is fibrous dysplasia. I also have munite syndrome. The lesions that grow on my bones, they're tumors.

[00:16:49]Basically, it's overgrowth of bone. My cranial facial area is one of the most affected. Sometimes this bone right here, my muscle will tighten around it and it will become larger.

[00:17:06]And when it's large like that, it's harder to breathe. If I were to turn my head too hard, I could technically break my neck. I have it in my 9inth and 12th rib, tailbone, and lower vertebrae as well. I experience pain daily. Today, I'm feeling it a lot in my ribs and my tailbone and lower back. and then a little bit bit of pressure behind my eye. Doctors have been concerned about my eye. It is very possible that my eye will be pushed out of my socket due to the growth and the change over time. My brain is actually being squished and pushed to the left. I've had doctors come in and be like, "Oh, you can read."

[00:17:54]And I'm like, I went to school for it. Sure can. And they're like, "No, like you're not supposed to be able to do that. We don't even know how you're operating the way that you are."

[00:18:08]>> Hi.

[00:18:08]>> Good morning.

[00:18:09]>> Good morning. Good. Come on.

[00:18:13]>> What was your childhood like before you noticed symptoms of your condition?

[00:18:16]>> Honestly, my life was great. I was riding roller coasters and I was able to play however I wanted. No restrictions.

[00:18:26]>> We had no idea you had it, but obviously you did. But you can definitely see from pictures of when you were younger.

[00:18:31]There's nothing. It's symmetrical. You would never have known.

[00:18:34]>> Tell us what happened at the dentist.

[00:18:36]>> I was 12 years old. I was going in to get some fillings done for my cavities.

[00:18:44]I woke up the next day. I went downstairs and mom, she had this look on her face and she just said, "What's wrong with your jaw?"

[00:18:52]>> And I knew instantly that something was wrong. So, I called them up and I asked if they would please um have you come in so we could do a scan.

[00:18:59]>> The next day, my mom got a call and they went in and my doctor actually had it pulled up on Google >> and they let us know that you had fibrous dysplasia with Mckon outbreak syndrome and that it was very rare.

[00:19:14]Sadly, it will only get worse. It's not going to get any better. It's not going to stop growing.

[00:19:20]>> I couldn't imagine having to be so strong at a young age. And then not only that, but to know that you've been in pain every day since you've been born. I I can't imagine what that must feel like.

[00:19:32]>> Everything that I've loved doing, roller coasters, no more. No jumping on trampolines, can't run due to the risks that I could face if I fall. I'd be protective of you either way, but I guess a little bit more since you're a lot more fragile.

[00:19:47]>> My mom and dad, they sat me down and mom was like, "No matter what, we love you.

[00:19:53]We love each other. This is not going to destroy us."

[00:19:56]>> I promise that I would never vet my hearten. So on those days, you know you're crying, I'm going to cry with you like I always have. And on the days when you're strong, I'm here, too.

[00:20:09]When I have a family that allows me to heal, it's a lot easier to heal instead of being pushed down all the time by both outside and inside sources.

[00:20:19]>> I'm picking out clothes to take a shower.

[00:20:22]>> What made you start posting about your condition on social media?

[00:20:25]>> Anger. I swear to God the next that tells me if you don't push those sunglasses all the way up your nose they are. Anger was my first reason that I started posting and then it became more of like an educational thing. I don't like when people just kind of ask you like so what's wrong with your face and they step away from you like it's contagious like oh am I going to get that? I've been called a lopsided.

[00:20:52]Nobody is going to be attracted to somebody that that is that asymmetrical.

[00:20:56]A person put on there that I should model. And underneath somebody was like, "You're joking, right?" And then they said, "Modeling isn't for deformed people." Deformed people. Mm- not. No, no, no. We don't talk like that. I decided that maybe I can reach my fibrous dysplasia audience. If anything, I can help them directly. I want to help. Hi guys. Get ready with me. I'm going to do my makeup. I'm going on a date. I've had difficulties with dating because people choose to see the disease instead of the person with it. I always struggled when I was younger, especially with my disease and my face looking the way that it does. That part kind of hurt my confidence a little bit. I've had not so great relationships in the past. It was belittling. I could feel that when they looked at me, they didn't see me.

[00:21:46]They saw what I had. And I need somebody that sees me like I see me. You're probably wondering if you've had such crappy people in the past. What's different about this time? Why are you going on this date? What's so special?

[00:21:59]The man doesn't suck. Hi, lovey.

[00:22:02]Michael and I met. I went to a car meet.

[00:22:06]So, I approached him. I was trying to be cool. All I said was, "So, this is your car?" That hooked him. I didn't tell him initially about like my fibers dysplasia. And it took me a while. It took me a couple of months for me to actually be like, "This is what I have."

[00:22:22]>> I was very nervous that he was going to be like put off by it and not want to deal with it because a lot can come with that.

[00:22:31]>> Knowing that she went through a rough time going through it. I just want to let her know that she's not going to go through it alone anymore. So yeah, >> he just looked at me and he was like, "And you're beautiful inside and out."

[00:22:46]and that's what I want. Thank you very much. My boyfriend is taking me roller skating today, which I am actually kind of nervous about. I am an eighth of an inch away from being paralyzed. If I fall, I could hurt my neck and my back.

[00:23:05]>> I feel nervous. I think we'll kind of just take things slow and see what happens from there.

[00:23:10]>> Just take it off slow.

[00:23:13]Wee. I feel like everybody deserves to live. Even if there's a risk, it's good to just kind of face these fears. Now, when I have the support system like I do, I can push through anything.

[00:23:26]Today, it just kind of helps me realize more that like I am in control of what I'm allowed to do. And at the end of the day, if I want to take that risk, I'm allowed to take that risk. Instead of me having the disease, it's like I own it.

[00:23:42]It is mine that I take care of. It doesn't own me. I don't let it control me.

[00:23:51]>> I'm Nyla. I'm 22 years old. I live in Greenville, South Carolina. Today I'm going on my first blind date. I think this will be my first date in a long time. So, I'm excited. Got to make sure I get all doled up and everything.

[00:24:06]Dating hasn't been the best. Being in a wheelchair, it causes a lot of men to feel insecure. They always see my disability as a deal breaker, but it's an advantage, honestly. Like, who doesn't want accessible parking? I mean, you up close to the store. I'm really comfortable with who I am. And I'm okay with just showcasing my chair. I call it my rolling throne. I'm a queen on wheels.

[00:24:40]What's going through my mind right now is um a lot. I'm very nervous. Kind of wondering how he looks and wondering to expect about the date.

[00:24:50]>> My name is Ken Lewis. I am a senior accountant. What I'm hoping for out of the date is uh just a good experience is uh building relationships, maybe networking, maybe finding a sweetheart.

[00:25:04]>> Oh, hi. How are you now?

[00:25:06]>> I'm good. How about you?

[00:25:08]>> Nice to meet you.

[00:25:09]>> Nice to meet you.

[00:25:10]>> My name is Ken.

[00:25:11]>> Oh, nice to meet you. My name is Nyla.

[00:25:13]>> I'm get situated right here.

[00:25:15]>> It would turn me off if he reacts negative about me being disabled or that he's trying to make it awkward.

[00:25:24]>> So, what do you usually uh do for fun?

[00:25:26]>> Before the whole co I used to like to travel around a little bit in the US.

[00:25:30]So, yeah. But I applied for my passport so I can be able to travel outside the US. Oh, she trying to get stamps out there. Okay.

[00:25:37]>> What about you?

[00:25:38]>> Um, I'm actually traveling to Colorado this weekend.

[00:25:41]>> Oh, nice.

[00:25:42]>> I have a photo shoot out there. Um, I am also a part-time model.

[00:25:47]>> Oh, you model? I model, too.

[00:25:49]>> Oh, hey.

[00:25:51]>> We got a lot in common.

[00:25:52]>> I'm telling you. What kind of model you getting into?

[00:25:56]>> Oh, I just Well, um I'm part of the modeling um agency called Between. So, my first gig was Savage Fenty. Yes.

[00:26:06]>> Yeah. So, I be doing a little bit of something something.

[00:26:10]>> You doing Hey, you doing your thing out there? Well, all the and >> when I was younger, I wanted to be a fashion designer. I was like, I'm going to be a doctor. I'm going to be all I had so many dreams. So, when I be like got bullied and then I had to go to therapy and that's when I realized that I really wanted to go into psychology. I major in psychology. M okay.

[00:26:33]>> I really want to go into counseling, but I don't know. I kind of like go with the flow type person. So, >> I kind of just see where life takes me.

[00:26:44]>> I remember one guy, he came up to me. He said, "You should really yourself because nobody don't really likes you.

[00:26:52]>> Then you model, then you about to graduate.

[00:26:56]I might take a couple of notes. Matter of fact, to pay for ahead, go ahead and take a couple notes.

[00:27:02]I'm going run to the bathroom for a quick second.

[00:27:05]>> My first impression is like he's really great. He He can make a great conversation. I think he's taken the fact that I'm in a wheelchair very well.

[00:27:15]The fact that he's not feeling creeped out and he's very comfortable.

[00:27:20]>> I do find him very attractive.

[00:27:23]>> I know.

[00:27:25]>> So, when you first saw me, what you thought about me, you know, being in a wheelchair?

[00:27:30]Well, actually, your smile took me away from the wheelchair. I ain't going to lie, as soon as I walked in, but uh you know, it's my first date with anybody that had uh any disorder. Actually, what is your disorder?

[00:27:41]>> Uh I have a rare form of musculardrophe called Oric. I'm the only one in the state of South Carolina with my disease.

[00:27:47]>> Oh, wow.

[00:27:47]>> Yeah. And at the time of my diagnosis, I was the number 96 in the whole world to have it.

[00:27:52]>> Well, let me tell you, you're rare.

[00:27:54]>> There you go. You're rare.

[00:27:56]>> There you go. Hey, you got to look at the bright spots of them.

[00:27:59]>> Yeah. I always say I'm one in a million.

[00:28:00]So >> there you go.

[00:28:02]>> I call my wheelchair my rolling throne cuz you know I'm a queen and everything.

[00:28:07]>> I feel like when it comes to me, people never want to try. And if they do find attraction in me, they really try to see my wheelchair as the problem, but not realizing that, you know, it doesn't have to be a problem. It's just a life thing. A lot of men are not very open-minded. They kind of have a lot of question. They make assumptions. They want to know too much before even trying to get to know me. They'll be like, "Oh, can you have sex? Can you do this? Can you do all that?" And I'm like, "Yo, you don't even know my name."

[00:28:40]>> I always shut guys down. I'll be like, "But can you have sex, sir?"

[00:28:45]>> I really look for someone who's very gentle. I think that's very important. I met a lot of men that was gentle, but like I feel like they try to hide it cuz they want to be like masculine and strong. Like I like a man who knows how to be gentles and knows when to be strong and understand there a balance.

[00:29:02]How about your dating life?

[00:29:04]>> Actually, I've been uh I was engaged at 21.

[00:29:08]>> You was engaged.

[00:29:10]>> Stuff started stringing apart and you know and then she finally told me, "Okay, I wasn't ready when you asked. I just didn't want to make you sad." Split ways and then you know >> Yeah.

[00:29:20]>> Now it's been four years me single. So, this is my first time ever being with anybody with a disorder, you know. But looking at you from right here, she I can't even tell. She telling you, man, I got your hair done looking.

[00:29:36]>> Oh, yes. I got to say, Listen, look at that.

[00:29:40]>> This I got to stay with my title. I call myself what this say. So, period. I got to I got to keep up with my title.

[00:29:48]>> You got to >> Yes.

[00:29:50]I don't allow my disability to define me or hold me back. I just see it as like, you know, it just caused limitations, some challenges, but you know, I'm just going to jump over that and just keep going.

[00:30:03]>> I will do this again with you.

[00:30:04]>> Oh yes, most definitely. I had such a great time. The date went great. Um, he was so amazing. Thank you.

[00:30:12]>> We had a great conversation. Um, his vibe was great. I really felt like um he didn't really focus so much on my disability and he really actually want to get to know me and my life. I would hope that he would love to see me again.

[00:30:27]The date went pretty good. It's better than what I expected actually. Uh I just met a good great person. Her condition doesn't didn't change anything. I just uh I just really I rather build a friendship relationship first and then uh see what we can uh build on to that and see what we can branch off.

[00:30:44]>> Do you think you'll meet up again?

[00:30:45]Actually, uh I think we will meet up because I did promise to take it out one more time.

[00:30:50]So, yeah, it's a good chance, a very good chance because the skin's very tight and gets very dry. We have to moisturize Dylan's feet quite regularly. His toes here don't straighten, do they? They get very sore as well. MDP affects Dylan's feet.

[00:31:11]Dylan walks on his bones. He has no padding at all. He does need to use a lot of protection otherwise they just to ulcerate and just become so sore that he can't walk. You want to put your socks on?

[00:31:25]>> I have a condition called NDP syndrome.

[00:31:29]NDP stands for mandible or dysplasia with deafness and foid features. Some of the effects can include loss of fat, loss of hearing, and it can cause a really small jaw and small ears. When Dylan's condition became obvious, we were aware that he'd lost fat all over his body. Hearing was an issue. There was the additional factors of autism. In terms of Dylan's clothes, we had to be really careful to get things that he'd actually wear. Dylan has quite sensory issues in relation to his clothes.

[00:32:04]My condition is only known to affect me and 15 other people worldwide. Sometimes I do feel sad about it. I think that it's extraordinary because I'm very unique.

[00:32:21]When Dylan was born, he was like any other baby. When he was about one, people started to comment on how thin he looked and asked me if he was eating properly.

[00:32:33]Dylan was my first baby, so I didn't really have anything to compare him to him. When he was about 18 months, he lost all the fat from his body and his face was quite skeletal looking.

[00:32:47]A lot of doctors started questioning whether we were looking after Dylan properly, whether we were feeding him right. That made me quite upset.

[00:33:00]the more that we went to the hospital, we'd be told that they thought that something was wrong. They'd tell us they thought he might have leukemia. They'd do the tests for that and then they'd say, "Oh, it's not leukemia, but we think it could be this." And as the conditions that they were testing him for became rarer, it became scarier and scarier. We didn't know what was happening until Dylan was 10. We were told that Dylan was the ninth person in the world with MDP syndrome. The oldest person with MDP is 65. It's a genetic condition. For some people, it shows when they're very young, like Dylan was 18 months. For other people, it doesn't start showing until they're 11 or 12.

[00:33:40]So, we're not sure what impact that has on the symptoms and how things progress.

[00:33:45]I was just so nervous about Dylan starting high school. I just felt like I was throwing him to the sharks. And I think the first couple of years especially were very difficult. School at the start was difficult and I didn't think anyone at school cared. I would come home and and go in my room, but I think music helped me. I use my family to help me to stay strong. I started to get into photography around about the start of high school and I would take photos on my phone and that was a way to help me to stay happy and I would just come home and show my mom and my dad the photos that I took on my phone and they were quite amazed.

[00:34:38]Social media was a great way to show my photography work to people and just to show that I have something that I'm passionate about.

[00:34:48]>> I think Dylan just developed that that strength of character to say, well, this is me. This is who I am.

[00:34:57]>> I think photography has helped me to keep going.

[00:35:02]Without photography, I would not feel as positive about myself and I don't think I would be as confident as I am today.

[00:35:16]I also love dancing. That's a big part of my life. It's something that I'm also really passionate about.

[00:35:24]>> Your movement is really free flowing.

[00:35:27]You're connecting with the music. It's really beautiful to watch Dylan dance.

[00:35:31]You can see pure joy.

[00:35:34]>> Dylan amazes me every day. I can't believe how it's turned out really. It's just persevered to just become this amazing young man. We're really proud of who you are and everything that you've had to deal with and the way that you've done it with such grace and such strength and such humility.

[00:36:05]My name is Kirsten. I am 22. I have pre-trix taxia. It causes progressive coordination loss in all of my muscles.

[00:36:18]Takes me a little bit when I get up to get ready for the day.

[00:36:23]Growing up, I never would have thought I would have this. I always thought I would be the person who could still do a back flip when they were 30 years old.

[00:36:38]Typically, when you get diagnosed, the doctors say you'll lose your walking in about 5 to 10 years. It affects speech as well. It can cause heart problems.

[00:36:52]Sometimes when I'm more tired, I'm scared I'll fall. I do fall sometimes.

[00:37:00]Dad, help me bring my coffee out.

[00:37:04]Both my sister and I have a FA. They first suspected something with my sister. She was having some balance issues.

[00:37:14]>> I think the first time that I noticed something was wrong. I think when we went on our family vacation, I could kind of see her walk in her gate. I was like, it looks a little off. We really then just put Lauren kind of through the gauntlet for the next four months going from doctor to doctor to doctor trying to figure out what all this was.

[00:37:34]>> I remember vividly the balance test and I was like I feel like all the tests they're doing to her and she's struggling with I'm struggling with too.

[00:37:45]>> Yes. She did the balance test where she closed her eyes and she fell over and I'm watching her do that and I closed my eyes and I kind of started swaying. They took my blood. My test results came back 2 weeks later. I was numb. I did not want to believe it. I didn't want anyone to talk to me about it. I was totally freaked out. My disease is progressive.

[00:38:10]So what I can do now I won't be able to do in 2 years, 4 years. It is hard to stay positive when it is such a hard diagnosis. We try to continue encouraging you guys to live your dreams. They've changed a little. The diagnosis was definitely hard on my parents because no parent wants to hear that their two daughters both have a rare disease that's progressive. They don't really show that they're upset or struggling, but I'll catch them maybe being upset on their own and they'll try to act okay and strong for me, but I know it has to be really hard.

[00:38:48]>> You guys uh you know are now holding down careers and doing awesome just pushing through this and saying we're not going to let this defeat us.

[00:38:57]And here we go. It is terrifying knowing that I am going to lose functions in the future. I honestly try not to think about it, but when I do, I try to turn that fear into working out and fighting it.

[00:39:21]Trying >> to keep those elbows straight.

[00:39:23]>> Physical therapy now is a way to kind of work out my stress and my anger. stress reliever and I feel really accomplished when I finished a physical therapy session.

[00:39:36]>> It's difficult to watch, but we know it's necessary and we know where we're at and we just got to keep pushing forward.

[00:39:42]>> All right, >> here's my day in the life of living with free drugstoia.

[00:39:49]>> What are some of the negative assumptions people have made about your condition?

[00:39:53]>> People think I'm drunk. There have been instances where people are mean like bouncers and they're like, "I don't care. You're making it up." I've spoke on TikTok about this topic. And it was crazy to me how many people there are that do not care about people who have disabilities. Like they were like, "If you have a disability, you shouldn't be out drinking." I am a human. I do deserve to go out and have fun and have social interactions. But it does really get to me because I'm like, they don't know me. They don't know my story. Like, how dare they?

[00:40:30]>> I want anyone with a rare disease to know that you are not alone.

[00:40:37]>> Hello. How are you?

[00:40:39]>> I'm good. I've missed you.

[00:40:41]>> Come on in.

[00:40:44]>> Today, my friend Madison is coming over.

[00:40:46]She knew me before diagnosis and after diagnosis. She has been the greatest support.

[00:40:53]>> Do you remember when the day I got diagnosed and I called you?

[00:40:58]>> Do you remember that conversation?

[00:41:00]>> I do.

[00:41:01]>> It was so sad. I was so sad. I cried a lot. I cried a lot that day.

[00:41:06]>> I thought I would be that 40-year-old mom who could still do a back flip on command. But >> if you would have asked me, I would have I would have beded on it as well.

[00:41:16]>> Yeah. Growing up, I was varsity cheerleader. I was the girl who would get thrown in the air and I'd be on one leg, they'd throw me up and catch me on the other leg.

[00:41:25]>> How does it feel just looking at these now?

[00:41:28]>> I don't know. It kind of makes me sad.

[00:41:32]>> Yeah, it does. Some of your pictures took care of.

[00:41:35]>> I love that picture.

[00:41:36]>> Is it hard that you you know that you can't do stuff like that now considering you were an athlete your whole life?

[00:41:45]Yeah, I feel like I have this crazy skill and that got taken away from me. I miss being able to dance.

[00:41:54]I wish I could still dance and I've lost that ability.

[00:41:59]>> She wants to have fun. She wants to dance. She wants She wants to have all of these experiences and she can't. And for me to to see that is hard. Um, I wish I just pick her up and take her out there and dance with her. Like, I always have to remind myself, it's okay.

[00:42:22]You're okay. Everything's fine.

[00:42:25]>> It was all about the fun, the friendships, and you can't ever take that stuff away.

[00:42:31]>> You're right. Nobody will can ever take those from you. You'll have those forever. Those memories for sure.

[00:42:37]>> We wouldn't have been so close if we didn't cheer together all these years.

[00:42:41]>> I love you.

[00:42:44]I am hoping in the future there is going to be a cure and I'll never lose my walking. But even if I do, I just really hope in the future that I have a family someday and still do the things that make me happy.

[00:43:00]>> We love fishing. This was actually our first day ever. My boyfriend knew that I had FA when I first met him. In the past, guys have been totally freaked out by FA and their families, and they were like, "You don't want to date a girl who's going to be in a wheelchair."

[00:43:15]>> We first met and I first told you about FA. What was your initial reaction?

[00:43:22]>> Um, at first I had no clue what it was, but I did a little bit of research and I mean, it doesn't have no issue with it for me. So, >> and it didn't scare you at all.

[00:43:33]>> No, it's not really. No, >> he is very understanding. He knows that I do get a lot more tired than he does and he will step it up and help me when need be.

[00:43:43]>> I've had a few people ask if I'm comfortable to be there to support you and that's totally something I'm willing to be here for and I'm thankful to have you with me.

[00:43:55]I hope that people know that if they have a disability or they're newly diagnosed with a health condition that it's not going to stop you from finding love and living your life to the fullest. You can find adaptions to do the things that you love to do. My perspective on life I am grateful for and I wouldn't have had that if I was not diagnosed with redoxia because I like to live my life to the fullest. I like to be happy and I try not to let the little things get me down in life.

[00:44:34]I'm about to call all my friends. Oh Lord have mercy. Hopefully it works.

[00:44:40]>> I'm Alexandra. I'm 27 years old and I have Liam syndrome.

[00:44:45]>> I'm Victoria. I'm 30 years old. I'm this one's sister. William syndrome is a a condition kind of like down syndrome, but we missing chromosome 7. It's characterized by cognitive and developmental issues. Along with the developmental delays, they also have very like highly social personalities.

[00:45:08]>> Hi, I'm Alexandra. I have William syndrome.

[00:45:11]>> They all have an affinity for music. Do you know Nickelback?

[00:45:14]>> I do.

[00:45:15]>> Love that band.

[00:45:18]They have similar facial features. And y'all have a wider mouth. And then y'all, y'all usually all have like the starburst blue eyes. A lot of y'all do.

[00:45:28]Oh, yeah. If you came close to my eyes, you would see it. Hi. I talked to my friends that had the same William Syndrome. She's made William Syndrome friends from all over the world. They Facebook Messenger um all the time. Like all the time. I'll be like sewing and I'll look over and some of them are sleeping and they're like watching each other sleep. Some of them are like dancing and doing their own thing. We're really crazy.

[00:45:59]>> What do y'all ask me to do to Alexander when y'all are on the phone?

[00:46:02]>> Oh, no. No, no, no, no. I know where this is going. Don't. Huh?

[00:46:07]>> You can tingle her >> and tickle her.

[00:46:11]>> It doesn't feel tiring to match her happy energy. She's always been that way. It's always been a consistent in my life.

[00:46:18]>> Me and my sister spent every day together. I love hanging out with her.

[00:46:23]We are going to the thrift store to find new items so we can create something really cool today. Put your shoes on, girl. Sometimes we argue. I mean, we're sisters. That's what sisters do. She's a precious sister. That's why. Where's your jacket? Throw me mine.

[00:46:47]Thank you.

[00:46:49]Told me throw it. So I threw it.

[00:46:50]>> You did. You did throw it.

[00:46:55]My parents were always very open and honest about her disability. Our mom, she took her out of school and she got homeschooled where she could have the one-on-one attention that she actually needed. It was kind of in that point where kids aren't so as accepting when they kind of get to that age where they start forming friend groups and oh, she's a little different.

[00:47:18]That's something I really I don't think she would have been able to handle. But she didn't have to go through that.

[00:47:24]>> No.

[00:47:25]>> Are you happy? Are you happy about that?

[00:47:28]>> Oh, yeah.

[00:47:31]>> Oh, this is not as cute as I thought it was.

[00:47:36]She has so many cute clothes. It's ridiculous.

[00:47:41]>> I love clothes. They're so pretty.

[00:47:44]>> Well, we like fun, happy, like funky clothes. It's kind of hard to find. So, we just make our own.

[00:47:52]It's like treasure hunting. We like treasure hunting and then we like creating. So, we treasure hunt and create all at the same time. That's funky. How does it make you feel when you find something that you really like?

[00:48:06]>> I get excited immediately. She goes like this.

[00:48:11]>> She got blue nails.

[00:48:12]>> Those are cute.

[00:48:13]>> Thank you.

[00:48:14]>> Are you a people person, Alexand?

[00:48:16]>> Yeah, if I know them well enough.

[00:48:19]>> Yeah, but back when you were younger.

[00:48:22]It wasn't if you knew them well enough.

[00:48:24]>> I used to love hugging people that I didn't know cuz it made me happy.

[00:48:30]>> She would. So she would wander off and just give anybody a hug, which is sweet and most people don't mind, but you know, some people do mind. Not everyone is friendly. Not everyone has good intentions. It took a while for you to understand that.

[00:48:45]>> Victoria taught me not to. I worry people will take advantage of her, but I will always be there to protect my sister in the car.

[00:48:57]Good job. So, the mottos that are on our clothes, we try to use phrases that are like be yourself, stay weird, normal is boring. You know, if you're weird, that's fine. Like, embrace how you're unique.

[00:49:10]>> I love that one.

[00:49:11]>> You like this one of you?

[00:49:13]>> Yeah.

[00:49:13]>> Yeah. Says normal is boring. And it has the William Syndrome logo on there as well. So any of our items like t-shirts wise that we make that has the William Syndrome logo, we donate a portion of our um profits to the association.

[00:49:28]>> These colors match together. You like those colors together?

[00:49:32]>> Yes. So I do the sewing cuz I enjoy it and she like has no interest in sewing.

[00:49:38]Um but she helps. You want to cut it?

[00:49:41]When she cuts it's a little jagged but I like that. It just adds some uniqueness to it. She likes to I mean have the final say so on the designs to make sure that they're Alexander approved. So all of the designs have been Alexander approved before they go on the website.

[00:50:00]And I'll get something and I'll say, "What do you think about this?" And she'll be like, "No, that's ugly." And so I'll try again until >> I'll be honest with you. I will tell her how it is. This one's one of my favorites cuz it has me on it.

[00:50:15]You cut off the bottom to this to make it like fray and worn looking.

[00:50:20]>> And who models the clothes when they're done?

[00:50:27]>> Oh, okay.

[00:50:29]Walk towards me with your model walk and runway go and then striker pose.

[00:50:38]Good job, >> Alexander. How do you feel when you're modeling?

[00:50:42]>> I feel good. She is the best model. Oh.

[00:50:46]Oh, I look good.

[00:50:49]>> Which one you think?

[00:50:50]>> Oh, that one's cute.

[00:50:51]>> You like that one?

[00:50:52]>> Yeah.

[00:50:53]>> I like that one.

[00:50:55]>> And we make videos.

[00:50:56]>> Yes.

[00:50:57]>> For what do we make videos for?

[00:50:59]>> Tik Tok or Instagram?

[00:51:01]>> Are you ready?

[00:51:02]>> Yeah.

[00:51:02]>> I feel like I have tried to create platforms to where it is positive and there is love. Everyone gets trolls and it would really irk me when they would make comments on my sister. That was part of the reason why I was hesitant in the beginning to even put her on social media. I mean, there are things that could get her down, but she chooses not to. So, it makes me proud. Just the way that she loves and cares about people is a good reminder for me to just see the world from her point of view. Cuz I think our world, especially nowadays, just needs a lot more of that.

[00:51:44]Why are you proud of me?

[00:51:46]>> Cuz you have been there for me since I was born.

[00:51:50]>> Yeah, but I'm always going to be there for you. I know.

[00:51:56]That's what sisters are for. Huh. You should be happy with what makes you unique cuz normal is like really boring. Yeah.

[00:52:10]I just going to give you a journ.

[00:52:16]I need assistance to everything whether it's eating, taking a shower, brushing my teeth, going to the bathroom. I have to complain.

[00:52:27]>> His condition is worse and worse every day. He was driving and he fell down and we had to go to the doctor.

[00:52:35]>> I was proud. I think that he was Yes, that happened 9 months ago >> when I was a year and a half. I got pneumonia people and getting diagnosed me as type two.

[00:52:54]>> Here is when he was 4 years old. The doctor say he's going to die. That was very hard. And we say we have to do a big big party because he's going to die.

[00:53:06]>> Every single year after that we go to the same doctor and we lo in his face that I'm still alive. I am 24 years old.

[00:53:17]>> His chest is very tiny for his organs inside one lung totally doesn't work.

[00:53:24]When the machine beep, I know that he need suction fast. But when the machine don't beep, he told me, "Mommy, I need suction." Is because he feel that the muc was coming. The doctor showed me how I had to do it. The first time that was very very scary. I just can't disconnect here when he I do this. Oh my god. But with the time you use it.

[00:53:50]>> I learned how to suction him at a really young age since like seven years old.

[00:53:55]The first time I suctioned him, I was definitely scared because we were in a moving vehicle. My mom was driving and he needed suction right away and there was nowhere to stop. Definitely has prepared me for everything that's happened since.

[00:54:11]>> Medical school.

[00:54:12]>> Christopher's condition has definitely molded my path. because of him I am going into the medical field. Journalism has been a very important part of his life. I know that he always wanted to be a journalist. Another interest of his is looking for celebrities.

[00:54:29]>> The first time I became famous just because my Instagram started to go up.

[00:54:35]This is the day four months after the World Cup of 2014 happened. That day, Christopher took a picture with Thomas Rodriguez, the number one player in the Columbia team.

[00:54:50]>> The star player posted me on his social media. My phone just starts blowing up out of nowhere. When I drag some takes a lot of dedication, I need to know everything. Every single step they take.

[00:55:07]Billy, I want a hard one. We just got lucky. We borrowed a car. She went out to the place and there was literally half the city waiting outside the place. She came out she got my concern which said it was a really cool moment X wanted me available so he was in a good mood. I got to to the location. Security were nice enough to let me in and wait for him to come out. We were able to chat. We were able to sing a little bit.

[00:55:46]Yeah, he was really really nice. My son talking skills to help me with my journalism. I only applied to three schools. I wanted to tell my family that I could but I had my student and I got an email.

[00:56:03]I also it's Colombia. This is the dividing moment. I got my bachelor's degree from gen university and my master of science from Columbia University graduate school.

[00:56:23]It was hard but I was able to graduate with others. My mom was a face lo.

[00:56:33]>> I am very very pro on my son Christopher when he was like 10 11 years. I never think that he go to the college but after that he do the maestria and I am very very proud of him. When I go outside, a lot of people wants to know how we try him.

[00:56:55]>> This used to be an everyday thing day he come to the park.

[00:57:00]>> Every day we had to do this to see him smiling, laughing. That's everything. I don't need more people. My dream is to be a sports j analyst and in terms of writing and otherism is just to be able to tell stories of immigrants that make a New York City with diversity that it is.

[00:57:33]Being a disabled member of the community, it's not easy to change the nar. But obviously there's always going to be a first time. And the first I did.