THESE amazing individuals were born with some of the rarest conditions on earth, and because of that, they’ve had to overcome a lot of medical and social hardships. Although they may have been born different, that hasn’t stopped them from finding someone special to share their lives with, even if their differences have caused many to question the legitimacy of their relationships...
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00:00These amazing individuals were born with some of the rarest conditions on earth.
00:05One in a million people have it, it's rare.
00:12At first, I was not expected to live past the age of three days old.
00:17They've had to overcome a lot of hardships and difficulties as a result.
00:22I've had a lady follow me in a Walmart one time trying to record me.
00:26She made me feel like a freak.
00:29I wanted to hide the tumors because I didn't want to make other people uncomfortable.
00:36But just because they were born different, that hasn't stopped them from finding someone special to share their lives with.
00:43Was I worried that I would never find love? Yes.
00:46No matter how hard some people have struggled to believe it to be the case.
00:53She would ask me that, why are they talking to me like this?
00:56Their other halves love and cherish them, despite what many people see as barriers to finding love at all.
01:04When people talk to me and congratulate me on looking past Kristen's disability, I think that they're kind of missing the point.
01:11I'll say, yeah, she is amazing.
01:15Starting with Pia.
01:18I'm very fun, I'm outgoing.
01:20I don't let anything stop me from doing what I want.
01:24I go for my dreams and I live it.
01:2627-year-old Pia was born with a rare congenital birth defect known as sacroigenesis.
01:35It means I was born with a shortened spine and I have to walk on my hands.
01:45One in a million people have it.
01:48It's rare.
01:51My disability affects me outside of the house because I would have to use a skateboard to get around.
01:58And I would either have to use a chair or a power chair to get around so I normally can't really do a lot of things like other people can.
02:06I have my nice little shoes that I wear inside and out of the house so I don't hurt my hands.
02:21Okay.
02:23Growing up with sacroigenesis, well, I always saw myself as normal.
02:29Through growing up and through my teen years going to high school and all that, that's when a lot of the bullying happened.
02:36They'd be rude, just call me names and just be like, oh, you're in the chair or you have no legs or an amputee or whatever.
02:43I'm just like, oh, dear.
02:46Oh, dear.
02:48Just keep on going about my positive little life and whatever my head thinks inside, it just pushes all those mean people away.
02:58I've been doing makeup for a very long time, ever since I was 15.
03:02It just makes me feel glamorous, makes me feel beautiful, makes me feel like, I don't know, I just love it so much.
03:12And I'm really good at it.
03:14Not only has Pia had to overcome the difficulties that come with her rare condition, she also realised something else was different when she was younger.
03:23I first realised I was transgender in my whole life.
03:28Ever since I was younger, I wouldn't second guess it.
03:32It wasn't just something that just happened or I just woke up one day and decided, okay, well, let's go ahead and start dressing up as a girl because you feel like a girl.
03:39I don't know. I've always known in my heart that I am.
03:42And it's just, there's no ifs, ands, or buts about it. I just am.
03:48I have basically a girl's mind and just a boy's body.
03:53But now I'm enhancing it with hormones and making my freaking body pop and making myself look fabulous.
03:59So that's what it's about, right?
04:03I came out to my family when I was 15 and I finally told them, okay, look, I'm transgender.
04:08And my mom, she already knew.
04:11My dad was not, he was not very happy with my decision.
04:19He didn't want his son to be a woman and he couldn't, it took him a year and we would have arguments about that.
04:27And it just, it was hard for him.
04:33Despite the challenges Pia faces, she's always keen to promote positivity through her experiences.
04:44Hey guys, it's me, Pia. I'm with my cousin.
04:47She's in a cute little, what is it?
04:51It's not cute.
04:52It is, okay. We're like Mario Kart realness right now.
04:57I just want to let all you guys know, this goes for trans women, trans men, whatsoever.
05:03Don't ever put yourself down for who you are being and who you are and your soul.
05:13And if it's right, do it.
05:15Because you know what? I am tired of having to validate who I am.
05:20I don't give a fuck. I'm not trying to fool nobody.
05:23I ain't trying to trick nobody whatsoever.
05:25I'm a beautiful transgender woman and my name is Pia Martell.
05:33Maintaining relationships with my birth defect have had their ups and downs.
05:39Pia struggled to meet someone who could accept her as she was, but then she met Andrew.
05:44People judge me. I don't care what people think.
05:49My first impression of him was, what am I getting myself into?
05:58But then he has this charm that I just was really attracted to.
06:05Just like every normal couple, we fight, we argue, we bicker.
06:09We go through our little temper tantrums here and there, but we always come together and we make it work.
06:15And that's the thing about relationships is you communicate.
06:18Are you pouring this on top?
06:19Yeah, it's going to go on top of the rice.
06:21Oh, this and this.
06:24The rice is a little too hard, baby.
06:32Ow, drop me.
06:36She's a very beautiful girl. She's sweet. She's nice.
06:41And she's, I don't know, she's just, she's wonderful.
06:45She's, you know, brightens up the day. She's everything. I call her my angel.
06:57My birth defect has not gone in the way of physical intimate ways with my husband.
07:03I think it's just fine.
07:06Well, in the future, I would definitely like to get top and bottom surgery.
07:10That would be in the future for I can manifest my look more better.
07:15Even though I do love myself for, you know, everything now.
07:18I kind of trained my brain to really just be happy within right now.
07:22But I don't think it's too stressed out.
07:24Because it does take time. It takes time.
07:30What am I dreaming of being in the future?
07:33Being able to travel the world and to make the world a better place.
07:38It's allowing everybody to see me for me and to know that it's okay to be yourself.
07:49Alex has neurofibromatosis, a condition where tumors form on nerves in the body.
07:55And she grew up thinking she had to cover that up.
07:59The tumors first started appearing probably like the chest, belly area, I believe.
08:06Hiding my skin, like hiding my, you know, self.
08:10I have a couple of like shirts that are like turtleneck, wearing long jeans on a hot day.
08:17If I could wear long sleeve, I would wear long sleeve shirts.
08:21I've always kind of wanted to cover up.
08:24Having to explain, I didn't want to make other people like uncomfortable.
08:28And I didn't want them to further make me feel not confident in myself.
08:35You have those people that were just cruel.
08:38Like, you know, they'll look at you and be like,
08:41Ugh, what is that? You know, why you look like that?
08:44And I've had somebody ask me, was I contagious before?
08:47And I've had somebody ask me, was I a narcissist before?
08:51Somebody asked me, was I contagious before?
08:57It is difficult. It's still difficult.
09:00It's a work in progress, like every single day.
09:04Some days I have good days and I'm like, girl, you bad.
09:07And then other days I'm in the mirror like,
09:10Ugh, this big old bubble in my face is just getting on my nerves.
09:14I hate it. I hate everything.
09:17Recently, Alex has begun to realise it's time to stop hiding her condition.
09:22It's difficult, but I'm thankful that as I grow in age and maturity and wisdom
09:28and all of that good stuff, that I'm like, forget, forget.
09:32Whatever it is that's causing me to feel this way, my own irrational thoughts,
09:37the opinions of other people, forget it.
09:40I want to be just as free as the bikini wearing and crop top
09:46and sports bra wearing girls that nobody questions.
09:51Today is the big day. I get to go hang out at the beach.
09:55I want to wear something cute and revealing.
09:57I'm going to go without my shirt, without my shorts.
10:01I'm just going to be free, like normal.
10:05My boyfriend and my daughter, oh my gosh, I wish she was here so you guys can meet her.
10:10My daughter, she's a major confidence builder for me too.
10:14Every day she tells me she loves me.
10:21Every day she tells me how beautiful her mommy is.
10:24Alex has been with her boyfriend, Anthony, for five years.
10:28He has been a big driving force in making her love her body
10:31and the effects her condition has on it.
10:33First waking up in the morning, the first thing he tells me is,
10:37babe, you're so beautiful.
10:38And he calls this one the meatball.
10:42And they do not want me to remove it for anything in the world.
10:46It's so perfect.
10:49It is.
10:50It's so weird.
10:51I believe she's gorgeous. I believe she's absolutely gorgeous.
10:54So when she covers herself up and I know that she doesn't really want to,
10:59I'm usually the one that's just like, don't do that.
11:02Don't do that. Be you. Be the best you.
11:05And if you do that and go out here confidently,
11:09just the same way I see you're beautiful,
11:11your beauty is going to be undeniable to anybody else who sees it.
11:16I want to show more because I can.
11:20I mean, I can. Like, why not?
11:23Just slightly nervous, but I'm excited.
11:26Like, I'm excited to go to the beach.
11:30Just, you know, it's the weekend.
11:32So if it's a lot of people there, I don't really want that vibe of,
11:36you know, where people stopping and looking.
11:39This one's my favourite.
11:40Today, Alex is going to proudly show her body off in public for the first time.
11:45Is there something you would like to say to anybody
11:48who has said or written negative comments to you?
11:51What would that be?
11:52If there is any point in time where you're ready to learn
11:57or where you're ready to have an open conversation,
12:00then my doors are wide open.
12:04I actually am a little bit more anxious than I anticipated.
12:08There's a lot more people here than I thought would be.
12:12It's going to be like some unveiling.
12:33I am incredibly proud of Alex, and she's come an incredibly long way.
12:45I know it's been a journey.
12:47Now that I'm not hiding my body anymore, I feel normal.
12:52I feel like I belong here.
12:57I get to put my story out there,
12:59and I get to be in a position to kind of let other ladies and guys know
13:05if you have something going on that people can physically see about you
13:09that is outside of normal, what we call normal,
13:13you are still fabulous, you are still beautiful.
13:17You should let your light shine for the world to see.
13:20What does the future hold for you and Anthony?
13:23So, the future for me and Anthony, he better put a ring on it.
13:32I'm just kidding.
13:37In Chicago, husband and wife Joe and Venia have been together for two years.
13:44Hey, my name Joseph.
13:46This is my wonderful empress Venia, and I was born without a job.
13:50When I first met Joe at work, I seen him walk into the building,
13:54and it was early in the morning, and when I saw Joseph,
13:58I was thinking to myself, am I really seeing this?
14:02Because, like I said, it was early, and I'm like, am I really seeing what I'm seeing?
14:06And I didn't want to talk to him because I felt like I knew I was curious,
14:12but I didn't want to be rude and ask him what happened,
14:15because I was just having all these assumptions of what happened to him.
14:18And so finally one day, he just, you know, he mentioned it with somebody else,
14:23and that's when I found out he was born without a jaw.
14:25Joe was born with an incredibly rare condition called otofacial syndrome,
14:30which caused him to be born without a jaw or a chin.
14:34With that condition comes things like my hearing lost
14:37and the ability to can't smell as good as normal people would smell.
14:41Growing up like I am, it was a hit and miss,
14:44because I don't expect everyone to accept me, but I got all kinds of responses.
14:49Responses such as people running from me because they are scared,
14:53or they would scream or cry, but on the flip side,
14:56I do have people who love me and they do not see this condition.
15:02I realized I had feeling for her on the second day I seen her after me helping her out.
15:06She came to work and when she turned the corner and seen me,
15:10she had a smile on her face that I was like, that's the most beautiful smile I ever seen.
15:15Then when I walked past her station, she signed the word hi to me.
15:19I was teaching her sign language a little, but the way she did it made me feel some kind of way.
15:28I have never dated anyone with a disability before.
15:31Joe is the first person I've met with a disability.
15:35When we were friends, people always questioned our friendship,
15:38and if we were more than friends, I would always tell them,
15:41no, no, no, we're just friends, because I was embarrassed, I was ashamed.
15:45But eventually, getting to know Joseph time after time, I looked over that and I didn't see his face anymore.
15:56I just saw his spirit, his personality.
16:00So the way me and Joe communicate is through his phone.
16:04He used the text-to-speech app and also with sign language.
16:08He taught me alphabets, so I know from A to Z the alphabets.
16:12I've got to learn patience with Joe because he has to use his talk to speech,
16:16and I've got to wait on his response.
16:19Joe is very independent. He doesn't need my help with anything.
16:22The only thing I would do for Joe is help lend his food up for him.
16:26Sometimes when he's tired, I'll give him his feeding tube.
16:31But everything else, he's independent with it.
16:35We got married June 26, 2020, and we didn't tell anybody.
16:40We just eloped. We went to a courthouse in Indiana,
16:43and we were just signing papers, trying to get ready for it.
16:47We wasn't planning on getting married then and there,
16:50but the lady at the courthouse said,
16:52And I was like, sure.
16:53And so I wasn't even dressed. Our family wasn't there.
16:57And it just felt all wrong, but it felt right at the same time.
17:01Because of Joe's condition, the couple get a lot of judgment about their relationship.
17:06We get things like, she can't kiss him or she must be cheating on him.
17:11Other things consist of personal matters, such as sex.
17:14We get things like, she can't kiss him or she must be cheating on him.
17:19Other things consist of personal matters, such as sex.
17:22And we are faking marriage for attention.
17:24It's a lot which my wife will probably mention too.
17:28So when me and Joe go out together, it's basically just stares.
17:31People pull out their phones sometimes, recording or taking pictures.
17:36But they never say anything. That's the thing about it.
17:41I never hear anybody saying any rude comments. Just staring.
17:44But I see it as clear as day. I get that a lot.
17:47Yes, I know I look different and most people in this world have not ever seen anyone like me.
17:52But rather than to act out of pocket or ignorant, just ask me what happened.
17:57Or even ask my wife.
18:01So my mom, when she first met my husband Joe,
18:04she was not pleased because she didn't like the fact that we didn't have a wedding.
18:09And she didn't know.
18:10When I first saw Joe, I was taken aback by his physical handicap.
18:15Non-judgmental, but just wanted to know what happened.
18:18It was kind of surprising.
18:20I thought they would probably have to look after him.
18:23So I didn't understand. It took me a while.
18:27As I got to know him, he kept coming around.
18:30He's a remarkable man.
18:32He does things that normal men don't do.
18:36He's a hard worker for one.
18:39He's attentive to her.
18:41He cares about her. He loves her. And she loves him.
18:43And he brings out some good qualities in her.
18:47I'm so happy.
18:48The main thing I wanted for him in the world was to have someone next to him
18:51that understands him and gets him.
18:55So he was all love when he told me.
18:58I'm so excited. I'm still a little brother.
19:00But until this day, Joseph is still helping me with life, with everything.
19:06And I'm learning every day. Every day.
19:10What I learned about love, that love has no face.
19:13It has no eyes. It has just the power of God behind it.
19:17If love is really there, you will adapt to whomever you are with
19:20and it won't be a fight to accept them for who they are.
19:23That's what I learned about love when I am with Vania.
19:30Like Joseph, Caitlin was also born without a jaw.
19:33But for her, it was because of a rare craniofacial disorder
19:37known as Treacher Collins Syndrome.
19:39This right here is my airway.
19:43I don't have a jaw and my tongue blocks my airway from my mouth.
19:46So having the trait helps it support me breathing a lot more better.
19:50I need to be careful how I clean it.
19:52I usually clean it like once a week.
19:54Treacher Collins Syndrome is a genetic condition that I was born with.
19:58It's a bone feature where I was born without no jaw, no ears.
20:03I had a hearing aid because I don't have ears, obviously.
20:06It's hard for me to chew and breathe on my own.
20:09There's certain things I can't do like swallowing water or chew proper food.
20:14I have to be careful what I eat or else I will choke.
20:23I would have to say first or second grade,
20:26I remember being looked at so many times.
20:29Like I would get scared at, laughed at, pointed at.
20:33I remember being around sevens.
20:35Kids would start picking on me.
20:37They would call me names like a frog or alien or all these hurtful names.
20:42I didn't want to go to school because I was kind of like,
20:46I don't want to feel sad, you know.
20:48My parents told me we need to talk
20:51and they explained like this is why people are doing this to you
20:54because you're born different.
20:56Due to her condition,
20:57Caitlin struggled to form romantic attachments early on in her life.
21:01But then she met Montre.
21:03My dating life,
21:05I never dated anybody like an actual relationship.
21:08I remember being so, so scared.
21:12We met in August.
21:14Back in 2022?
21:162022, yeah.
21:17At first I was very scared of dating
21:20because I never knew what to expect.
21:23I've never dated anybody with this condition
21:25which made me more interested about what the condition is
21:28because I never knew what it was.
21:30I wasn't nervous about it only because
21:32how you look doesn't really bother me at all.
21:36You know, I've always told you this.
21:38You never judge a book by its cover until you actually read the book.
21:44I love you.
21:45I love you too.
21:46The relationship that I have now,
21:48it makes me feel good.
21:50I don't feel like I have a condition.
21:52I don't feel like I'm any different.
21:54I don't feel any less of a human.
21:56I just feel good around him.
21:58And I never met a guy like that.
22:03You know, I'm her cameraman.
22:04I gotta get her recording every time she's dancing
22:06because she's so good with it.
22:08You know what I'm saying?
22:09When did you first discover you had a talent for dancing?
22:15I was 10 and my dad noticed I was moving my body around.
22:21He's like,
22:22Yee-haw, what are you doing?
22:24I said, oh, I like your music, you know?
22:27You know how to dance.
22:28So I'm like, okay.
22:31Dancing makes me feel stress-relieved.
22:35It helps me get my mind off of things.
22:37Dancing is my way of letting things go
22:41and letting things out of my system
22:43instead of, you know, screaming, punching walls.
22:46When I see Kayla dancing, how do I feel about that?
22:49I feel like she's living her best life.
22:52I started posting on TikTok on August of 2023.
22:56My boyfriend actually is the one that told me to post,
23:00like, hey, you should show off your talent.
23:02Imagine how many people you would uplift
23:05with your condition or disability in general.
23:08And I sat there like, hmm, who knows?
23:11I was kind of scared because of the hate.
23:13There's a lot of hate comments in the world right now.
23:15I said, you know what?
23:16Screw it. I'll do it. Why not?
23:18You know what?
23:19Screw it. I'll do it. Why not?
23:21I never thought my videos were going to be viral.
23:24It was unexpected, and it's just crazy.
23:26This dance, it was going viral for a while.
23:29So I did the dance. It went viral overnight.
23:32It hit 11.5 million views.
23:35But yeah, overnight, everybody was commenting,
23:39like, girl, you can dance.
23:40Like, I think there were more shots
23:42that people with conditions like me
23:44can do something like that.
23:47And I saw all the nice comments.
23:48I saw all the negative comments.
23:50I was like, OK.
23:51At first, negative comments
23:52got in really, really hard.
23:54I remember at first, you would be very emotional.
23:59And that's understandable.
24:00Who's not emotional? Everybody is.
24:02She would ask me that,
24:03why are they talking to me like this?
24:05What filter is this?
24:07They're assuming that my disability
24:10or my face is a filter,
24:12which I'm like, OK, you're trying to act slow.
24:14I don't know.
24:15How do this happen to a person?
24:19And I'm like,
24:21some of y'all ain't smart.
24:23Or you're just trying to be funny,
24:25and it's not funny.
24:26It's stupid.
24:28The next one is a frog analogy.
24:31I'm like, OK, like, really?
24:34It's literally the same comments
24:36every single day or every time I post.
24:38So it's nothing that bothers me anymore, at least.
24:41I feel like they got too much time on their hands
24:44where they feel probably miserable themselves.
24:46They have nothing to get really hurt,
24:48and if they do, they need help.
24:50We kind of just kind of like...
24:52Shrug it.
24:53Shrug it, look at it like,
24:54OK, you want to be negative, OK.
24:56Is there anything better you can do with your life
24:59besides being negative?
25:01I sometimes look at it as a boost to say,
25:03OK, since you want to be that negative,
25:05I'm going to keep doing what I'm doing.
25:07You're boosting me up to be a better person.
25:09If you can make it negative to a positive,
25:11then what can break you?
25:13It's kind of like, hate me some more,
25:15you're making me happier than ever.
25:17Basically. Basically, yeah.
25:19People assume that he's with me for my money
25:22or he's only with me because he deals back for me.
25:25My understanding that a lot of the times
25:28is not about looks.
25:30When people say, oh, he's just doing it for the money,
25:33you don't know that. You don't.
25:35And it's not true.
25:36And it's not true.
25:37I make my money, she makes her money,
25:39we stick together.
25:41As long as you can be truthful and stick by my side
25:44and be yourself, that's all I need.
25:47I'm with him because I feel safe with him.
25:50I feel safe. I feel myself.
25:53I don't have to pretend to be somebody that I'm not as well.
25:57Looking back, my confidence was zero.
26:00Now it's more like, I would say like an 8.
26:02I'm not going to say a 10 because I'm not going to say
26:04I'm perfect. I'm not.
26:06I'm a human being. I have emotions.
26:08I have feelings. I have bad days,
26:10everyone has bad days.
26:11I feel so bad that people are not feeling confident
26:14about themselves.
26:15You know, people always say like, hey, your confidence,
26:18you're so confident. I wish I had that.
26:21I wish I had that.
26:22And I always tell them, you need to build it.
26:24What I hope people learn from this story is
26:27never give up on yourself.
26:29Never give up on your passion, your dreams,
26:31your goals, your life goals.
26:33My visions and my goals for the future are
26:36just keep going. Push hard.
26:38I will never stop doing what I love to do.
26:40And it's just me being me, me being myself,
26:43surrounded by love, positivity.
26:45You can't change the past,
26:47but you can change the future.
26:49What's going to come after?
26:50What's going to come after you next?
26:52I have a message for the people that are trying
26:54to bring me down.
26:56You can keep trying.
26:58I'm in my own place, I'm in my life,
27:00doing what I gotta do.
27:01You're worried about what I do.
27:03You're worried about what I do?
27:05Keep watching.
27:06Ernie has Chordal Regression Syndrome,
27:08which caused his body to be born different.
27:15I'm always happy, you know,
27:16I don't like to be a sad guy, so.
27:20I always like to be the funny guy in the group
27:22or the crazy one.
27:26Everybody always calls me Crazy Legs,
27:28that was my nickname.
27:32My condition is pretty much,
27:34I have half of my back, I want to say,
27:36from T1 to T6, which is all my upper bones,
27:40and my lower bones from L1 to L7
27:43I do not have in my back.
27:44My legs are a little different.
27:48They're smaller than normal, as you can see.
27:50I wear size 13 and taller shoes.
28:00I've never met nobody like me before,
28:02so, I mean, I guess it's pretty rare.
28:04I've only known of one person to have it.
28:09I walk a lot on my hands, sometimes it gets tiring,
28:12but a lot of the times I'm on my skateboard,
28:14that helps a lot.
28:16I usually use my right hand for my braking and my gas,
28:21and my left for my steering wheel.
28:24When I got my driver's license,
28:26the lady told me that I drive better
28:28than most people with legs, you know,
28:31I think, nice.
28:34Growing up with my condition wasn't bad.
28:38I had a lot of friends.
28:41People made fun of me and pointed at me or laughed at me,
28:45but I had those friends that always had my back.
28:52A book.
28:54As an adult, sometimes it gets me,
28:57because, you know, I'm out places,
28:59and I get people that treat me differently, you know,
29:02and so, then it affects me and I break down, you know, and I cry.
29:10I've had a couple occasions where they've done it on purpose, you know.
29:15I've had a lady follow me in a Walmart,
29:17one time trying to record me,
29:19and I was on my skateboard.
29:22And I just felt weird.
29:24It didn't feel right, you know,
29:25I felt like, she made me feel like a freak.
29:28And I went to my wife and I said,
29:32let's go, you know, I had to leave.
29:35I don't know, I just, I didn't like it, you know,
29:37it made me feel not normal.
29:42Ernie's wife, Vanessa, has been a huge source of support for him,
29:45as he's navigated the world with a physical difference.
29:50I hide nothing from her.
29:51She knows every secret, what every scar is,
29:54she knows everything, you know, everything.
29:58I didn't know anything about Ernie's condition when I first met him.
30:02I thought he was cute.
30:04Yeah, I just thought he was a little cute guy.
30:10Ernie's really good with my kids.
30:12He's been there since forever.
30:14They were little babies when we met.
30:18He helps them a lot.
30:22My dad inspires me a lot.
30:24Sometimes when we go skating, he inspires me by some tricks
30:28that I don't think I can do.
30:30He, like, tries to push me to do it.
30:38I've always rode a skateboard.
30:43It makes me feel free.
30:45I feel like anything's possible.
30:48I feel like a normal person.
30:50I'm out there in a skate park and people come and watch me
30:53and it doesn't freak me out, you know.
30:55It makes me want to try different things.
31:03I'm proud of how he's getting sponsored by people
31:07and he's good at skateboarding.
31:09He's getting followed by Tony Hawk.
31:12I hope he gets sponsored by him now.
31:16If somebody told me I couldn't do something because of my condition,
31:20I don't think I would tell them anything.
31:22I would try to show them that I can do it.
31:25As I got older, I guess I've learned what my body can and can't do.
31:30But for the most part, I guess I do all right.
31:35I'm very proud of him for everything that he's achieved.
31:40When I first met him, I would say he was insecure.
31:43He was maybe more scared of the world than he is now.
31:48I've overcome a lot of stuff that people think I wouldn't have,
31:52so I'm grateful for it.
31:54Skateboarding has helped me improve my self-confidence a lot.
31:58It makes me feel good, you know.
32:00It makes me feel like I'm doing something right.
32:03I love it.
32:09Kristen was born with a rare condition called osteogenesis imperfecta,
32:15which causes bones to be brittle and break easily.
32:19I've really completely lost count of how many bones I've broken.
32:23Sneezing as a kid would break a rib.
32:27I'm very small. I think I'm about 3 foot 6.
32:30And also my back is curved, so I have scoliosis.
32:33So I'm full of metal. I have lots of rods to help strengthen my bones.
32:37I've had tons of surgeries.
32:40When she was first born, a doctor came in
32:43and his words were, there's a problem with your daughter.
32:46I thought, you mean she's not going to live?
32:48And he said, no, no, no, she's going to live.
32:50She's going to live like that. It's not a fatal condition.
32:52She's got brittle bones.
32:54Granddad keeping you on a pillow.
32:56Not wanting to hold you, being so afraid.
32:59It was a good thing that you had a doctor like Dr. Mosley.
33:02Because when I was bringing you home from the hospital,
33:04I was asking him, what am I going to have to do?
33:06What should I do?
33:08And he says, just treat her normal.
33:10Just let her be. Just let her be.
33:12How can I treat her normal when she's got such fragile, brittle bones?
33:15And he says, no matter what happens, she's going to break.
33:18The more you stop her from doing things,
33:21the more difficult life is going to be for her.
33:24Just let her be. Let her do things and take the breaks as they come.
33:28I'm happy you took his advice.
33:30I sure did, yep.
33:31Every time I break a bone, I mean, it's excruciating.
33:35But the thing about physical pain and the broken bones
33:38is that it's always temporary and I always yield.
33:41Oh my gosh, look at this.
33:43Michelle and Kristen.
33:45Neither one of you could sit up.
33:47But it's funny to look at you.
33:48Look, considering the condition you're in.
33:50We're having the time of our lives.
33:51Aren't you, though? Laughing.
33:53Now this is the way you used to cry.
33:58Kristen met her husband Mark online.
34:01It wasn't obvious from my profile that I had a disability.
34:05We decided that we wanted to meet up in person.
34:08And so I did want to tell him.
34:10It was funny because he told me afterwards
34:12that he never actually fully believed that I did use a wheelchair
34:16until he met me.
34:18He thought I was testing him to see if he was shallow.
34:24She told me online that she used a wheelchair
34:27and I thought, there's no way.
34:31Kristen is very independent.
34:33I don't think her condition has gotten in the way of our dating life.
34:36And I wouldn't say that I go out of my way to help her.
34:39They're simple things.
34:40Filling the teapot or taking the garbage out.
34:43No more than any other partner would bring into a relationship.
34:46He proposed to me.
34:48And we learned a dance together.
34:51We took lessons before our wedding day.
34:53I really appreciate Mark as a husband.
34:57He is someone that I can rely on 100%.
35:03Kristen has a very positive outlook on life,
35:05even given her disability.
35:10It's kind of molded who she is.
35:12And even in our relationship, it kind of helps to shape who we are.
35:25I'm happy with who I am.
35:27My disability has shaped my life, definitely.
35:29And my life is good.
35:31But it's these other things in society that make it challenging.
35:36With Mark, people often refer to him as my brother,
35:39or like a blood relative, rather than my husband.
35:42Because unfortunately, people still just,
35:44they don't see people with disabilities, people in wheelchairs,
35:48having these meaningful relationships or getting married.
35:52And fortunately, that's still a concept that people just don't put together.
35:57Kristen may have brittle bones,
35:59but that hasn't stopped her exploring the world and having adventures.
36:03Yeah, we love to check out the world and explore.
36:06When I was younger, it's not something I necessarily thought that
36:10I would be able to do so much,
36:12because the natural world is just not meant for a wheelchair.
36:16But we have found a way to make it work.
36:18We did a cooking class right on the hilltops of Tuscany,
36:22making fresh pasta, drinking wine.
36:24We've been on gondolas in the canals of Venice.
36:28We've stayed just outside of the Arenal Volcano in Costa Rica.
36:33She just keeps planning more and more for us,
36:35and it seems to get more and more adventurous every time,
36:38whether it's Thailand, Africa.
36:40We love to travel together.
36:42Hopefully soon, I will have an accessibility-related travel blog.
36:46I think that social media has made it that much easier
36:49for the disabled community to come together
36:52and share all of our strategies and tips and resources.
36:56So you've got so many muffins. What are these muffins for?
36:59Yeah, well, I thought it would make a good snack
37:01before we go out on our hike.
37:03Lots of energy in here.
37:05We're going to go and check out a new trail.
37:07Looks like it could be a little bit challenging.
37:09Challenging? It can't be any more challenging
37:12than the hikes I've seen you taking.
37:14When you went to Utah, oh my gosh.
37:16We're a little bit more bold now.
37:18We feel like if we could handle some of those other trails,
37:20anything around here, we can do.
37:22I think so.
37:23Got the bag?
37:24I got the bag.
37:25You're bringing your muffins.
37:27I think if anything, people who don't know us in our daily lives
37:31would assume that Mark is the primary caretaker of everything.
37:37That's not the case.
37:39There are things that I do, there are things that he does,
37:41just like in any relationship.
37:43This is a lifesaver, a game changer.
37:46We'll just put it on when we get outside.
37:49Cool.
37:50I do always have a bit of a fear, though, of my wheelchair
37:52kind of flipping over because that could
37:54obviously be pretty disastrous for me.
37:56Let's go.
37:58I will likely break a good number of bones,
38:00so I do have to be a little bit cautious,
38:03but I do feel confident having Mark with me, too.
38:07I think a lot of people might assume that I'm miserable.
38:10People will say to me, if I was in your position,
38:13I don't know how I could do it.
38:16I think it is important to spread the message
38:19that things aren't always what we think they are.
38:22It is definitely not miserable living with this condition.
38:26Oh, that's icy.
38:28I have had a lot of fractures.
38:30I have spent a lot of time in hospital.
38:32But if anything, that's just given me a unique perspective on life.
38:37Take your time.
38:40Bet you didn't think we were going skiing today.
38:42I didn't.
38:43She breaks easy.
38:45We have certain limitations, but we like to push the limits together.
38:49You're okay.
38:51Whoa.
38:58We did it.
39:01Kill conquered.
39:03When people talk to me and congratulate me
39:06on looking past Kristen's disability,
39:08I think that they're kind of missing the point.
39:11It's not that it's to see past the disability,
39:14it's that you're accepting somebody for who they are.
39:16So pretty over here.
39:18Yeah, it was worth coming down that hill.
39:20Did you want to come up and have a look?
39:22Yeah.
39:23I'm definitely proud of where I am,
39:26things that I've wanted to achieve I feel like I have.
39:30I'm really happy that I've met such a great man
39:33and that I have Mark in my life.
39:35I feel a lot more traveling in our future.
39:37There are many more places on our bucket list.
39:44Yeah.
39:47High five.
39:48Did it.
39:52Courtney was born with a rare condition
39:55that has caused extra tissue to grow in her face.
40:03So I was born with cystic hydroma,
40:06which is a rare birth defect that affects the lymphatic system
40:10and creates extra tissue and growth.
40:13My growth was on my chin,
40:16and it deformed my jaw when I was in the womb,
40:19so that is why I cannot close my mouth.
40:21Yeah, that was eighth grade.
40:22I have had many surgeries, over 20 surgeries in my lifetime.
40:26At the moment, I do not plan to have any more
40:30because it can be dangerous.
40:32As long as I don't have to have one right now, I won't.
40:34Despite her facial condition,
40:36Courtney has a passion for singing
40:38and often uploads videos of her singing to her YouTube channel.
40:43She has been singing for over 20 years,
40:46and she has a passion for singing.
40:53Singing is one of my outlets.
40:55It's my outlet for if I was being bullied
40:59or if I was going through a rough time,
41:01it was the way that I could express myself.
41:04People ask me in person,
41:06why do you upload?
41:07What's the point of uploading
41:08if you know you're different
41:09and you know you're going to get hate?
41:11For me, it's an outlet.
41:13It's an expression of me,
41:14and for me, it doesn't matter what people say.
41:17It's my choice.
41:18If you don't like it, you can go,
41:20you can click the next video.
41:34When Courtney first started posting online,
41:36her parents were worried about how people might react
41:39to her unusual appearance.
41:41She's faced more things
41:43in a short amount of time in her lifetime
41:45than anybody should have to.
41:52I know she's cried plenty of times.
41:54I know she's had so much support, though,
41:57that overweighs all the bullies that are out there.
42:01I think I have more of a hard time with it than she does.
42:05Dreams are beginning to come true for Courtney,
42:07as well as amassing a legion of new fans online.
42:11She's also planning a wedding.
42:13Was I worried that I would never find love?
42:15Yes.
42:16I was afraid that there wasn't going to be someone
42:19that would accept me and love me for me.
42:22My first impressions of Courtney when I first met her,
42:25she's beautiful, smart,
42:28she's talented, amazing.
42:31Hello, it's recording.
42:34I'm in the middle of text.
42:37Thank you, Pakistan.
42:38Thank you, guys, for tuning, hopefully.
42:41Can you guys see this?
42:43Tip, tip, tell yo.
42:45Chad is an amazing person, an amazing guy.
42:48He's so funny, always keeps me laughing.
42:51On my days that I feel really, really down,
42:55he's there to pick me up and makes me laugh
42:58and makes me happy.
42:59We like to go riding together.
43:01We ride our horses.
43:04Good girl.
43:05We watch movies, go on walks, go swimming.
43:08We do everything together.
43:10Courtney hopes that her videos will help
43:12to bring more acceptance for people living with her condition.
43:15I just want to say thank you for all you guys have done for me.
43:18You guys have given me more confidence and bravery
43:22than I've ever had.
43:23When I see Courtney sing, I feel excited that she can do that.
43:26If I sing, it sounds like all the dogs in the neighbourhood
43:30are going to join in.
43:31So to hear her sing is amazing.
43:34She has a beautiful voice.
43:35Life's not easy.
43:37And Courtney's proven that even under adversity,
43:41she still perseveres.
43:42It's been really, really hard to just accept myself
43:46and accept the way I look.
43:48And I've always wanted to look normal.
43:51But there's no normal nowadays.
43:55It's okay to be different.
43:57It's okay that I look different.
43:59For me, this is normal.
44:02And that's okay.
44:03And I'm okay with being who I am.
44:10I'm disabled.
44:11Recently, I've become a disability influencer.
44:15I'm a YouTuber.
44:17The name of my channel is Rolling Through Life with Talisha.
44:20Hi, welcome to my channel.
44:22Welcome back to my channel.
44:24Welcome back to my channel, Rolling Through Life with Talisha.
44:27So I have three children,
44:30two of which are twins.
44:32I met my husband, Quinton, in college, my junior year.
44:37The reason that I was attracted to her
44:39was due to her positive energy spirit and her courage.
44:46I have congenital muscular dystrophy.
44:49I was born with it as it's a genetic disorder.
44:52So that pretty much means my muscles are weak.
44:55And so I'm not able to walk at all.
44:58I have no muscle tone.
45:01So it's caused me to be wheelchair-bound,
45:05basically since birth.
45:07At first, I was not expected to live past the age of three days old,
45:12then followed by three months old,
45:15some 28 years old now.
45:18The reason I decided to start my YouTube channel
45:21is to sort of highlight the abilities
45:25that people with disabilities have.
45:27Even though we are disabled, we live normal lives.
45:32Ready?
45:34Mm-hmm.
45:36Towards your...
45:38Towards this side.
45:40You look excellent in this one.
45:43Check, check, one, two, check, check.
45:45All right.
45:46Hi, YouTube. Welcome back to my channel,
45:48Rolling Through Life with Talisha.
45:51Today, guys, I have some exciting news.
45:54I am newly Miss Wheelchair Delaware.
46:00It's basically a pageant for wheelchair-bound women
46:03who are looking to take over the world.
46:06No, I'm just kidding.
46:08Until next time.
46:10It's a wrap.
46:11There you go.
46:12Oh, yeah. Would you want to take a picture?
46:15Let me know when you're ready.
46:16You didn't show ready.
46:18No, I wasn't ready.
46:21Okay.
46:22Ready?
46:23Yeah.
46:25Three, two...
46:28That's a good shot.
46:29Okay.
46:30There you go.
46:31Is that good?
46:33Yeah.
46:35You sure?
46:36Should I take another one?
46:38This photo is a recent photo of when I was crowned
46:42Miss Wheelchair Delaware.
46:45I feel as though it was a great opportunity
46:48to showcase what it means to be a woman on wheels,
46:54as I like to say,
46:56but still powerful and elegant
46:59and sort of promote inclusivity
47:02in the disability community.
47:05You ready?
47:06You can sit up close.
47:09Not too close.
47:12Borden.
47:14Come on.
47:15Join in.
47:16Sit.
47:20Good job.
47:21Because of Talisha's condition and her husband being able-bodied,
47:25not everyone has been kind about their relationship.
47:29I am not able to walk and he can.
47:32Stir.
47:34Okay.
47:35Good job.
47:37So a lot of times,
47:39being disabled, it can be hard to cook,
47:43but when you have teamwork, it works out.
47:47There you go.
47:50Come on, guys.
47:51I know, but guess what?
47:53Your fork belongs right here, okay?
47:55Talisha has recently become a published author.
47:59What inspired me to write a book about being a disabled parent
48:03is simply my children.
48:05One day, they are going to ask me,
48:07Mommy, why are you in a wheelchair?
48:10That is an inevitable question that's going to be asked.
48:14I've always enjoyed writing,
48:16so I thought what better way to explain it than in a book.
48:20Her book and her YouTube channel are very inspiring
48:23and they basically help others see things within a different light.
48:28Since publishing this book,
48:29the reaction has been nothing short of amazing.
48:40Honestly, though she's in a wheelchair,
48:44she never acts as if she is in a wheelchair.
48:48And she always proves others wrong when they doubt her.
48:52So when people realize that,
48:54wow, she's amazing, I'll say,
48:56yeah, she is amazing.
48:58I would like to inspire others
49:01just by me living my life.
49:04Everything is possible.
49:06There's nothing impossible,
49:08even though it might be done differently.
49:15Sisters Yessie and Celia
49:17were both born with diastrophic dysplasia,
49:20a very rare form of dwarfism.
49:23The physical effect of my form of dwarfism
49:26is mainly short stature.
49:28But aside from that, everything else is average.
49:31Let's warm up the chocolate first.
49:33Teeth it is.
49:34Our organs and our minds,
49:37everything works the same as any average person.
49:39And the life expectancy is the same.
49:41I was born in Mexico.
49:42And back in the days,
49:44doctors had very little information
49:47about someone with my type of dwarfism.
49:50So when they saw me,
49:52they immediately told my parents,
49:54you'll be lucky if she can live to 10 years old.
49:58Yessie also has a spinal condition,
50:01which further affects her height.
50:03Dyscholiosis causes the curvature of the spine,
50:06which can trigger the hypoxia.
50:10Shake it, shake it.
50:13Growing up as a young kid,
50:15I did feel very pretty.
50:17I think it was because I would get all this attention.
50:20I thought it was positive attention.
50:22People would be like, oh, look at the little girl.
50:24But once I reached my teenage years,
50:27then I felt extremely ugly and different.
50:30Our older sister is average size.
50:32I believe 5'11".
50:34And people will only praise my height.
50:37And people will only praise my older sister
50:40for being tall and beautiful.
50:42That made me feel very self-conscious.
50:44So for about 6 to 10 years,
50:47I did not look at myself in the mirror.
50:49I hated the mirror.
50:51I started having more medical challenges,
50:54and that led into a lot of mean comments.
50:57That's when I started hearing a lot of,
50:59well, why are your parents
51:01spending all this money to take you to the doctor
51:03when you're going to be useless?
51:05They should just let you die.
51:07So I think that at that point is when I came to realize
51:10that being a little person was going to impact me for life.
51:14It was very hard. It was very hard.
51:17People would think that the biggest challenge
51:19was medical issues.
51:21However, I think that the biggest challenge was society.
51:25It makes me think of, you know,
51:27you were actually very vulnerable.
51:29You know, you were just a little child
51:31that had to deal with adult comments, per se.
51:36Growing up, my dad made me feel very strong,
51:39made me feel secure.
51:41My dad is very tall. My dad is 6 feet tall.
51:44Oh, look at this one.
51:45Oh, and this is you. This is you.
51:48He always made sure to remind us
51:50that we were beautiful no matter what
51:53and that we were going to go far in life.
51:55Then at age 19, I had a spine fusion surgery.
51:59And after going through that struggle,
52:01I developed more self-confidence,
52:03and I said, no more.
52:05You know, I am going to love my body.
52:07I think I got it. Let me try it.
52:09I want to learn.
52:11Yeah, that's pretty good.
52:13Yesi is 6 years older than Celia,
52:16so she was able to support her little sister growing up.
52:20Since I knew that physically we couldn't do much,
52:23I would remind my younger sister,
52:25you are very smart,
52:26so dedicate as much as you can
52:28to having a really good education.
52:30I'm a teacher, and I never thought I would be a teacher.
52:33I was always very shy,
52:35like being in front of big audiences,
52:38and now I have to be.
52:39I am a psychotherapist.
52:40I know the challenges, the emotional challenges.
52:43Having a condition that made my life even extra difficult,
52:48being able to have a broader perspective
52:51allows me to help my clients better.
52:54My husband's name is Brian.
52:57Yesi's husband, Brian, is 5'9".
53:01This hand's bigger than me.
53:04My wedding album.
53:05Oh, there's you.
53:07Before I met my husband, Brian,
53:10I never thought about getting married,
53:12but then I met him, and I said,
53:14why am I going to deny myself the opportunity
53:17to be with someone so incredible?
53:21It meant so much for me
53:22to be able to dance with my dad on my wedding day.
53:24I was crying, and you were not.
53:28Why?
53:29I remember that she did not want to get married
53:31over there in our town.
53:32She wanted something more private, more intimate.
53:35This one, oh, my God.
53:36I know that there's even this curiosity, per se,
53:40about, well, how do you guys kiss?
53:42Do you guys have sex?
53:43Things like that,
53:44so I didn't want to be in my wedding day
53:47and really worried about who's staring or who's there
53:51just because they just want to make fun of me.
53:54Do you think we should go get some stuff ready
53:56for when Danny shows up?
53:57Yeah, let's get some sex.
53:58Okay, let's do this.
53:59So seeing Yesi and Brian so happy,
54:01it just made me realize that love can be found anywhere
54:05with any person that genuinely cares.
54:08I just thought, yeah, maybe one day
54:09I could have that, too, you know?
54:11I'm currently in a relationship.
54:13I met him four months ago,
54:15and we actually started being official a month ago.
54:22It's very challenging to date.
54:24Being a little person has made it extra difficult.
54:28In terms of uncertainty, you never really know
54:31whether the person is trying to get to know you
54:34for who you are.
54:35There have been guys who have straight-up told me
54:38that they just want to know what it feels like
54:40to be with someone like myself.
54:42A lot of men see women with short stature as a fetish.
54:46It takes time for you to build that trust with the person
54:49and to really know what exactly are they looking for.
54:52It's up to you to be able to decide
54:55when you're willing to give them the chance
54:57to prove you that they're here for the right reasons.
55:02My boyfriend's name is Daniel.
55:04Daniel is 5'5".
55:06Hey, babe.
55:07Hey, babe.
55:08How are you?
55:13Hi.
55:14Hey, guys.
55:15Hey, how are you?
55:16Good.
55:17Nice seeing you.
55:18Same.
55:19Have a seat.
55:21So, Danny, now that you're dating Seria,
55:23I guess you're going to be dealing with a few of the things
55:25that me and Yessie dealt with as a couple.
55:27People judging, people looking, things like that.
55:30Yeah, I never really cared really much about what people think.
55:33People are always going to have their opinions,
55:35but as long as you're happy, you know?
55:37That's one of the most important things, being happy, definitely,
55:40and just learning to let a lot of things go.
55:42But after a few years of me being with Yessie,
55:45I kind of don't care anymore.
55:47One of the main misunderstandings from people
55:50when they see a couple like Ryan and I or now you and Celia,
55:55they either assume that we're looking for a caregiver
55:59or that you guys have a fetish.
56:02And third, there's also the understanding of,
56:06oh, you guys are taking advantage of us.
56:08So that is something that you are going to have to deal with a lot.
56:12I worry about it sometimes because her being a little person, you know,
56:15the way things are out there, people take advantage or something like that.
56:19Yeah.
56:20So we have to be extra careful.
56:22And if you two communicate well,
56:24she will be able to tell you when and how she needs help.
56:27So you're going to tell me whenever you want me to kick somebody's butt?
56:30No, I actually do ask for help when I need it,
56:33so I feel like I'll be comfortable asking him if I ever do anything.
56:36And I think that one of the things that people don't really think about,
56:40but it's true to us,
56:42is the fact that not only we're females, but we're disabled,
56:45so we mature faster.
56:48So him knowing, like, when to follow you, but also when disabled,
56:52also this is my piece too.
56:54She's also the one who basically sets up our goals.
56:57You know, she's the one who has the life plan set up for us,
57:00and I'm here following her so we can get to where we want to get to.
57:05I admire my sister because she's definitely someone
57:09who knows how to fight for what she wants.
57:13She has overcome a lot of obstacles since she was a child.
57:17The fact that she is where she is right now makes me feel very proud,
57:21and I always look up to her for that.
57:24How I feel regarding my condition, I feel pride.
57:28So we've come a long way.
57:30I'm just excited to continue to empower other people too.
57:35Sometimes I just forget that I'm a little person.
57:40I'm very proud of who I am.
57:42It was not easy, but the fact that I was able to overcome
57:46all of the obstacles that came my way makes me feel very proud.
58:35For more information, visit www.FEMA.gov