Living With The Rarest Facial Conditions | BORN DIFFERENT

I lost my nose to cancer

People say, well, how are you so confident? Because I fought dang hard

And I'm alive. I can't smile. I was born with a really rare neurological disorder called No-Deal Syndrome

And the syndrome is so rare that it only affects one individual in every three to four millennium

Gavin's a special little boy. He has a rare medical condition called lymphatic malformation

When people stare at Gavin in public, I think they want to ask what's wrong with him

But they just don't know how. I'm doing without a laser. Caitlin's challenge isn't her actual disability itself

It's more of the way so many people view her. I was told that my birthmark reminded someone of a dead fetus

I stopped covering with makeup. I just finally said enough was enough

Autumn has a large tumor on the right side of her face. We've had people call her the hunchback of Notre Dame or like the elephant man

Only certain people in the world have my rare ambition. She makes me look like I'm wearing a mask

Yay, I'm going to see my doctor. I'm hoping there will be options for me

None of them have had to deal with a case like this. I was diagnosed with stage 2 nasal cancer in May of 2014

When I found out, I was devastated. Just terrified. They wanted me to have radiation

The risks were quite profound. There was a great risk to my eyesight, risk to my brain, my saliva glands

I could have ended up on a feeding tube for the rest of my life. There's got to be another way

My best chance to be cancer-free is to have the full rhinectomy

The doctor said, you're a young, attractive woman. We don't want to permanently disfigure you

I told him, I appreciate that, but what good is pretty if I'm not here anymore

I made the decision, just cut it off. I can remember holding my children before the final surgery and just breathing them in

because I didn't know if I would be able to smell them ever again

I can remember the last time I was able to put my nose to warm it in the nape of my husband's neck

you hold on to what you can, especially when you're facing something like your mortality

After the complete rhinectomy, I was worried how people would react to me

particularly children, particularly my children. The first time our youngest son saw me without the gauze

he turned bright red and started trembling. And he said, oh, my goodness, mommy, what happened to your nose

You need to go see Dr. Connor right now. Dr. Connor is his pediatrician

When he said that, laughter through tears. I'm sorry. I do put up a brave face, and I do feel strong, and I do feel brave

but I've had to fight for that. People say, well, how are you so confident

Because I fought dang hard, and I'm alive. Nothing's more beautiful than alive

I'm pretty excited today. I'm going to meet my daughter Christina out for lunch

Hey, are you ready to go? I am. Let me grab my jacket and my purse. We're out the door

Alrighty. Can I have kisses? Bye. You can be good for Pop Pop

The first time I saw my mom without her nose, I could tell by the way that she was looking at me

that she expected me to have that wow factor that oh my gosh you look so different she's my mother

i was just thankful to still have her here i love you so much when i first lost my nose i noticed

that the stares really really bothered my family members so what i told the kids was well honey

they're staring because they're trying to figure out how i still look this good and i don't even

have a nose on my face. My face is without a nose and anything that's different or deformed or

anything of that nature is made to be scary. Society builds it that way. They had to wait

to make a prosthetic until I think it was six months after to give everything time to heal

I don't know if it's that I had lived six months without it

I didn't like the way it looked. I didn't like the glue. It irritated my skin

Like I couldn't breathe when I had it on. Not physically. I couldn't emotionally breathe

But I wore it for about two years. I just don't care for it

But maybe if I could get Reese Witherspoon's nose, it could look like Reese Witherspoon

And one day I was like, I'm not doing this anymore. And I still have people that ask me, why don't you wear that prosthetic

You would be so pretty if you had a nose. I'm pretty anyway

I just stopped letting it define me. I'm proud of my mom because all the stuff she's been through, she made it through

What has that taught you? Don't listen to other people if they say mean things

I do get a lot of comments though where people are telling me how they're inspired by my bravery to put myself out there no prosthetic

No conforming to what the world deems beautiful. I like to say a lot that society tries to fit us in a box from the moment we're born

And I want to shatter that box. I want to destroy it. I don't want anybody to ever feel like they're not beautiful

So this was the day that you were diagnosed with a condition

And it was Friday, 13th February. I was born with a really rare neurological disorder called Nogdea Syndrome

So it's basically like facial paralysis. And because of this syndrome, I was also born with an outer extremity deformity

And mine was bilateral telopies or clubbed feet. and around the age of I want to say 11 or 12 I had a really invasive operation

that was supposed to be able to make me smile but it was unsuccessful

And getting the news that was really heartbreaking on the day because you sort of thought well what's going to happen down the track

how will she progress, what will the teenage years be like, what will her young adult life be like and all those sorts of things

So yeah, it was heartbreaking. I think my confidence got knocked out of me as I got older

I didn't want to go anywhere because I was insecure about myself. But when it comes to physical bullying, it's tough

So I was pushed down hills. I had my bag ripped off my back, had books ripped out of my bag

I would be walking upstairs and people would kick my knees in from behind It was tough Of tough Oh of course I did I would always look at people and be like why can I be there Why can I just be accepted like they are accepting everyone else

I first started the self-help journey around the age of 20. That doesn't mean I fully accepted myself then

but it's been four years of me really working hard in all aspects of my life to make sure I can live the best life I possibly can

When I started to own who I was and my parents and everything about myself

my whole world opened up. I've sort of started getting better at the beginning of 2017

I was contacted by someone from ParaFed Auckland, which is the Paralympic sort of body here in Auckland

and asked if I wanted to give athletics a go. and so I was like sure I won't be running anywhere but I'll throw something

So they gave me a shot put and they said just give it a go

So I threw it and they were like wow okay you're pretty good and then they measured it and they were like

oh you've just broken the New Zealand record in your classification. Where I competed and got my classification to compete internationally

and also became world number one in my classification by competing there

which was just incredible. Being an athlete has given me so much discipline and strength and confidence

and it's really set me up and I think it really helped in terms of my recovery journey

Oh, everything's changed since accepting myself. My confidence, the way I interact with people, the way I interact with people online

Being 100% authentic to me. Like, I'm probably one of the most sarcastic people you'll ever meet

Gosh. I know, it is so hard being ridiculously offensively attractive, like I get it. I'm so sorry

And to be able to showcase that, especially on platforms like TikTok, like people just love it

I just don't care what anyone has to say and just go with the flow and accepting myself for who I am

was the greatest decision I ever made and it just keeps getting better and better and better

So I have recently become an ambassador for an organisation called The Good Human Factory, started by professional surfer Cooper Chapman

His main goal with The Good Human Factory is to just make people curious about mental health

I joined it because I believe in Cooper's messaging so much. I myself am such a huge mental health advocate

She's got this intelligence there that is very underestimated and yeah, mum and dad are very super proud of her

I've found myself that I've also found my purpose. I know it sounds so cheesy but I think it was all worth it

I'd say the main thing would be inspiring and empowering other people

I don't think I'll ever get used to that. It's something that still blows my mind today that people can take so much from me and my story

If you'd asked me a few years ago, I would have been probably a bit annoyed or sad about it

and I probably would have wanted to get another operation that was enabling me to smile

But now I'm so more than fine with it. Like I love not being able to smile, it's my superpower. What

Okay, Daddy, I'll be good. One thing everybody says when they meet Gavin is that he is the happiest kid that you'll

ever meet. I mean, everything that he's gone through, you'd think that he would be somewhat down

and have an attitude, but he's always happy, always smiling, always laughing. Kitty. Kitty. Kitty

We didn't know what this condition needed or how to treat it. It's not like any normal condition

It's super rare. To get sideways. Good job. Lymphatic malformation is an abnormal growth of cysts

within the head, face, neck, and it could even happen in wherever there is lymphatic vessels

And it occurs in only one in every 4,000 births. So we first discovered that Gavin was going to be born different when we went to our 18-week anatomy scan

We were there to figure out if he was a boy or a girl, and obviously to measure all of his limbs and heart

Crazy pro. The doctor came in, she started doing her scan, and she looked at us and told us, you know, he has some sort of mass

And she said it might be what's called a cystic chichroma or lymphatic malformation

When I first found out that Gavin would be different, I was terrified. I didn't know what to think

When he was born, his mass was a lot more severe than what they expected it to be

When we saw his, we were like, damn, that's nothing like we had ever seen

And the doctors were even, I think while we had so much care as the doctors

we were like, that's the worst we've seen in 10 years. So that was scary in itself

I first saw him, and you can see, like, the machines behind him

but I wasn't crying. I wasn't, you know, upset. That was him

That was my baby. Everything was worth bringing him home because as a parent

of course you don't want to see your child going through that, but at the same time, it's just who he is

That's who he is. That's Gavin's story. Bringing baby home. That'll be Dickie. Here we go. Oh, it'll be grumpy

Let's go. Having a child with a visible difference has taught me that life is precious

It's not always going to be the way that you think it is. For me, I don't really think that he looks different and it doesn't really bother me

I guess now we're on the other side of the spectrum versus seeing somebody's child look different

I think now I'm more so like you never know their story

When people stare at Gavin in public, I don't really pay any attention to it

I've had people come up to me and ask, I think they want to ask what's wrong with him

but they just don't know how. So they'll be like, how old is he? And he's so cute

But they just don't know how to, I guess, approach the situation

But if they just say, hey, what condition does he have? That's all right

Just ask. Honestly, I'm not going to get offended. I want to raise awareness

By sharing Gavin's medical adventure on social media, it has opened so many doors for raising awareness

I've had moms contact me with their children who have lymphatic malformation

and they don't know what treatment to go with, or they'd ask me for advice, and hopefully they didn't feel as helpless as we did

when we first started out. Ten thousand a half. Hey. There's grandpa

There's grandpa. There's grandpa. Victoria turned 29 a couple days ago. It actually your first birthday With him home With him home This time last year we were still in the hospital so it the first one we were both of our birthdays we were able to celebrate at home It good to be home

It is. It's gonna go get you. She's gonna get you with the pickle

It's gonna get you. Happy birthday to you. Happy birthday to you

through the hard parts of the journey allowed us to learn. When he was in the hospital, I always said we have to stay positive

I didn't want any negative energy in there, and I think that with him overcoming everything and him being so strong made me that way

And a lot of people reached out to me through his Instagram page. They're like, wow, you are so strong, and I'm like, that's just how I had to be

When parents see this story who are in a similar situation, I hope that they take away the fact that we are trying to be as normal as possible

Yes, there's always going to be that obstacle that you have to go through. Ask for help. Ask for support

You know, the first day you're going to think, the first, why? Why do I got to do this? Why me? Why me

But we always say this, and people always say this to us, is there's a reason he is our son

It's made us stronger as parents, as husband and wife, with our friends, you know

So it's going to have its challenges, but I promise you it will have equal and probably even better rewards

They didn't have drawn jeans, so it can't leave. It was a surprise from my parents when I came out with that umbrella

They put a crachioskine in because I couldn't breathe. And they also put in a G-Cabe because I couldn't eat in his hand

Going to surgeries and then putting back to skiing. I can train the middle of elementary school on how to use a feeding tube to eat

I can eat a little bit airy, but I'll mostly eat with the feeding tube

And then in 8th grade, I've got my feeding tube ice, so I'll just eat airy after that

I had a lot of activations growing up. Most of them didn't work the way that they were supposed to do

I had one about three years ago where they took part of their wood and stuck it in their drawer

It was pretty successful. I used to not have anything, any sort of drawer, but now I have this little piece

It still doesn't need to let it have prints. I felt great about that thing

It is a little bit less than I was hoping for, but it's great

I've talked to some doctors about surgeries in the future. I haven't found any that can do exactly what I need

I'm the one-step-eight children. My siblings now are very close. They are not really protective of me

I mean, in a good way. I was very independent and we spent a lot of time together just having fun

I was about 12 or so when Caitlin was born. When Caitlin was just a little baby, we had a nurse staying full time at our house

particularly at night, just watching over Caitlin while she slept because she was attached to machines to monitor her breathing

And then as Caitlin grew up, I had a close bond with Caitlin because she was just very playful

We were raised with parents that always had us singing. Caitlin, from a young age, was very percussion-oriented

probably because of thinking at the time that she wasn't going to be able to contribute her voice as much

But she actually does have an amazing voice. And so when we're singing as a family, it's always nice to be able to hear Caitlin singing

Practically everybody in the family can play some type of instrument, whether it's piano or guitar or the drums

Caitlin's pretty much able to play just about all of those, plus the marimba

It's really been inspiring for myself and for all of our other siblings and parents to see

and to witness how she has really blossomed in spite of having any type of disability

Caitlin's challenge isn't her actual disability itself. It's more of the fact that it can affect the way so many people view her

Posting on TikTok has really helped boost my confidence and just to know that I can do whatever I set my time to

I'm always excited to watch Caitlin's videos. I made this TikTok about how I eat and I thought I was kinda funny in it

I just eat with no tongue. I can eat pretty much anything

It got a lot of positive feedback and it went to a lot more people than I expected it to

I felt really great. It was nice to see that I could be a positive influence

I feel very, very blessed to have you not only as a sister, but also as a really good friend

Thank you, and I love you. I don't think there's anything that is stopping me from doing anything in the future

Be positive. What kind of good things are there? because they never yet are happening

or they never yet have things they're going through. You can always find something positive

and there's always good things around us. So here we have some photos of when I was younger

and we also have some photos of me when I was a newborn

Hi, my name is Kira McCracken and I have a Port Wine birthmark on my face

So it means that there is a vein that did not close when you were born

So it's a bunch of blood capillaries that just ruptured and came up to the skin

So these are pictures from when I had had laser treatments done

when I was a newborn and then this was healing time and this one is from me a year or two later

and we still had another one done. It would take about three months, honestly

for it to fully heal after one treatment. I started feeling self-conscious about my birthmark

when I was in sixth grade. It was not a good point for me in my life

Self took a big hit I didn like who I was and I wanted to be someone different I was told that my birthmark reminded someone of a dead fetus

Yep. So that was the only one that really ever got to me

That was only to make someone feel like crap. No truth to it

I started covering up my birthmark because I felt it would make the bullying and name calling

and the staring while being out in public easier to deal with on a day-to-day basis

back in the day it probably took a lot longer because I had professional grade tattoo covering

makeup. I had an airbrush machine that I would use afterwards. It used to take probably at least

a good hour to get it to not actually be seen. This is my old photo of me when I used to have

makeup covering my breathwork. That was from 2010, so 10 years ago. There's another one that says

2010 also. This one says 2011. And then

we get back into me not covering anymore. This was one of the first pictures I had posted

after stopping covering my book work. I stopped covering

with makeup when I was my freshman year in high school. I finally just got to a point where I was so fed up

and didn't want to have to do that anymore. I didn't want to hide who I was

I just finally said enough was enough. It made me feel that I was being myself

and showing the world who Kiera McCracken was. I moved down to Florida

That was a big change for me And meeting my significant other that I'm with now

Was a big booster as well I met him down there at work

My birthmark was the key factor of what made him want to come after me

He was very intrigued and thought it was unique and different And hadn't seen anything like it

And we were together for about a month and a half when we realized, that surprise, I was pregnant

And we have been together for six and a half plus years now with a five and a half year old

My daughter has asked me about my birthmark. She's asked me why it is different

I told her that it's a birthmark and I am this way. She just looked at me with both her hands and said, Mommy, you're beautiful

And that was that. And that's the best example that I feel I can set for her is to make her feel like she can be herself no matter what

I don't really mind stares. If you're going to be blunt about it and be rude with it, I'm going to give you an even worse look back

I'll make you feel real embarrassed about yourself if they're truly being rude

If you're a kid, you don't know any better. I've had kids tell me that my face looked like a blueberry to them

and I've said blueberries are awesome and they said yeah and that they wish their face was a blueberry

So it just depends on how you combat it. I love them

Yeah. You took very good photos. Thank you. We do take a decent amount of pictures together

or try to do family shots at least. I feel like it's really important for me to not cover up my birthmark

because it shows people that you can be yourself and be happy and have a life and do whatever you want to do

Be unique and stand by it and be on the box and weird. Show people that nothing holds you back

For fairness. Beauty to me is truly, I mean anything, if you see it in the right light

There's really no ugly in the world unless you feel that's ugly to you

I feel it has shaped me to be a strong, independent, motivated person

I see a very confident, proud woman when I look in the mirror now

who is a loving mom and strong-willed, motivated person to achieve their goals

Are you done? Okay. Autumn has neurofibromatosis type 1, where tumors can grow on your nerves

Autumn has one on the right side of her face and also in her belly area

We found out when she was about six months old. I had never heard of NF1, didn't know anything about it

Autumn, I'm going to put medicine on your little rash spot underneath your nose

She has some skin issues. She actually uses this on her eye almost every day

It keeps it from her eye getting really dry and cracked. Autumn has tons of birthmarks

She calls them her angel kisses. Autumn has a large tumor on the right side of her face

People can grow tumors on their nerves anywhere, at any point in time

What do you usually do in the mirror? Brush my hair and brush my teeth

We make faces all the time in the mirror. Selumetinib is a drug that Autumn has been taking to shrink her tumor

She takes it every morning at 6.30 and every evening at 6

She can't eat two hours before, she can't eat two hours after

and she's supposed to take it about 12 hours apart. We've seen a lot of improvement

Autumn's face is not as bulgy. You wouldn't maybe notice all the time, but you know, you can definitely

It's not as puffy. Her tumor is definitely shrinking. We can't see the tumor in her belly

but it's shrinking as well. So here's your little stool. We don't have these medical case studies

to try to figure out different drugs that will help. In my family's case, that would be detrimental

Autumn would not have this medicine. Her tumor would be continuing to grow

and if Autumn's tumor grows and isn't shrinking, she could have a stroke, she could die

I don't really know, they don't have an answer for us. We're going in there. It's cute

Alright, now what? Autumn's gone through a lot. She is the little kid that goes into the doctor's office

and says, let me take my blood pressure. Like, let me wrap it on my arm

You know, she's gone through phases of people making fun of her

And she really kind of turns the side. It hurts her feelings sometimes, but she doesn't let that affect her as much as I think it could

Okay, I got four because I like coloring different ones. Can I color some of those ones too? Maybe

Can you color on those table trays? You can color on the table tray if you want or down here

Which one do you want to color? I'm going to color this one. Oh, color. We've had people call her like the Hunchback of Notre Dame or like the Elephant Man

So there's a lot of pointing and why do you look that way? I like school. I like it better when I'm actually at school

What do you want to be when you grow up, Autumn? An Aryan. I knew you'd say that

I want to help the animals and the lions. Honestly, sometimes I think Riley gets more upset than Autumn does

She supports her sister. She will fight off any bully. Sometimes when she's crying, I just try to comfort her

Oh yeah, she's had some times where kids are really mean to her

A couple people in my grade would talk about her behind my back and behind her back

And one day, actually, I'm like, it's not nice. She's my sister

People in her grade would say really mean stuff too. They would make fun of her because the way she looked

Treat people the way you want to be treated. That's what I would always say to the people that would make fun

That's the main thing. Ready? It's heavy. Okay

You want to come around this side? Yeah, I forgot that I had that and I just saw it

What I like about running my bicycle is because I kind of like holding the pedals

It's really easy to pedal once you go fast and I like turning

Autumn is extremely unique and we love her for it. She's super social, very independent, she knows what she wants and she's not going to

let anybody stop her. I'm lucky that she is the way that she is because she basically accepts herself

She really just has a very positive attitude with everything. We have a hard time especially growing up because I didn know how other people are going to treat me And I was nervous about how I look I have a rare condition called NAPLIS It actually a super rare condition

There was a study back in 2018 that showed that only 13 people had this condition

NAPLIS is a face mask syndrome, so for my case, it made my eyes very tiny

I cannot straighten all my fingers all the way. I can always straighten out these two fingers

And it also affected my throat, so that's why I found this way

I had a really hard time with how people couldn't understand me

That's one of the things that kind of frustrated me when I was growing up

Morning, Mom. Hi, Mom. How old were you when you were diagnosed with this syndrome

Around the time I was in elementary school. I was not, you know, I wasn't treated like other kids

so it kind of made me feel like, yeah, I'm kind of different from everybody

I had a lot of things making fun of me because they don't usually see someone who looks like me all the time

Then as I got older, I realized, hey, this is how the world's going to be

I can't really change how other people think about how I am. My parents helped me a lot emotionally, especially through all my surgeries

I had a couple surgeries when I was younger. They actually tried to do surgery on my eye, but they couldn't open it

And then I had another surgery on my throat, which is my palate, because no one could understand

When he was born, we didn't know anything. We didn't know how long he's going to live or what kind of life he has to go through

I have no idea. He had to go through so many surgeries

I was like really heartbroken. I mean, at the beginning it was love

And I was like, yeah, why is all of this happening to me

But as I learned along the way, this is going to be like the 30 blocks

This is what I'm going to be. I'm going to use this one day to inspire people

Unfortunately, sometimes people are look at him or how he looks like

I saw a lot of time. He has struggled. He fight with those situations

I'm so proud of him that he never really complained. I think his mind from the beginning burns strong

Really not. As I look around I see a lot of people like complaining complaining about very small things about their lives So I was like all right I going to take the example of a man who never complains about anything

He just moves with me. And that's why I want to teach my kids to do

If they have the same disability as me, like, you've got to go through life like a warrior

How important was it having your mom there for you through everything

Oh yeah, it was super important that she'd be there. You know, because who else am I going to go through it with

Thank you, Mom. Of course. My previous surgery was 100% successful, so today I'm going to go see my doctor

I might ask him, hey, maybe have another throat surgery, what you do

or another mouth surgery where I can open my jaw a little bit more

What about your eye? Yeah, I'm going to ask about that too

I'm hoping you'll be open for me so I can speak and see easier

Hey, buddy. Long time no see. Good to see you. Good to see you

It's been a while. You're 21 now. I was there from your first minute of being alive

Isn't that crazy? Why don't you hop on up and let's get started. Sure. All right

So how's everything going? Health-wise, are we doing okay? Yeah, everything's been doing all right. I've been doing a lot of work now

Yeah, it looks good. I've been exercising a lot. It looks like it. Yeah, you're looking good. You're looking good

But you've had a long road, right? Yeah. You've had to see a bunch of other doctors and a bunch of other specialists

You've had some surgeries too, right? Yeah, and we're not so successful

so I'm hoping in the future there's going to be a surgery

or something that we can do to fix that you know well you know your condition is so rare

that I think a lot of this we're sort of learning as we go

and I think even for the specialists none of them have had to deal with a case like this

so a lot of it is sort of new and experimental luckily there's a lot of smart people out there

doing research on this now so you know So hopefully we'll have some solutions coming our way

But you know the amazing thing about you, buddy? Yeah. You've got a great sense of humor about the whole thing

And that's how you've been from when you were young. And that's why I've just enjoyed seeing you here in the office

I'm grateful. No, no, I'm grateful. So I learned a lot. I consider myself lucky to have met you and to have learned about this condition Because again there not many doctors in this world that know about this condition keep in touch i always here for you

good to see you you take care yeah okay so i started making instagram videos back in 2024 and all my friends were like hey you're

Really, you're not giving advice, you're not giving inspiration to others. So why don't you start content creation

And then I just started like going out the line from there. And it grew pretty quickly actually

Like within just a few weeks, I had like 10,000 followers. I got a lot of comments on my team

People call me different things. Like I get this one comment a lot, the engine final boss

And this point kind of makes me track a little bit because it's like

I really do look like an engine on the wall. Buddy's an awesome person, awesome soul

The most impressive, I would say, is just his ability to just take whatever challenge

and just go into it full steam ahead. How much drink do you feel, buddy

Much real drink. How's that, dude? Yeah. This one good? Yeah. All the way in

Yep. Everybody's going to play a lot of different games, you know

One, two. Three. And the way I kind of learned is that you can do two things

You can lie, you can do anything, or you can kind of shame it off and be like, yeah, okay

you got your thing very much. Once you look at him, it kind of makes you go inside yourself and kind of understand

like, none of us really have excuses. I was in awe from day one, and he earned my respect instantly

The way I'm approaching right now is not merely a sense of pride or kindness, but more like

I'm grateful. I'm grateful to have my career. I'm grateful to have my people around me

I'm grateful for everything that I've been put through. Challenges, obstacles, opportunities, whatever

I'm grateful. Whatever makes you different, it brings you. Because that makes you who you are

That's what's going to make you special. One final message I'd say, the universe is great, your life is great, and you are great