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LIVING with a rare condition is difficult, but for some whose outward appearance is so dramatically affected, it’s inescapable. These nine people have some of the rarest and most difficult-to-treat facial conditions in the world. From Neurofibromatosis and BAM Syndrome to Treacher Collins Syndrome, their conditions have baffled the medical world, causing shock and surprise for people around them. But these incredible people haven’t let their conditions stop them from living their lives in some extraordinary ways.
Producers: Ruby Coote
Editor: James Thorne
LIVING with a rare condition is difficult, but for some whose outward appearance is so dramatically affected, it’s inescapable. These nine people have some of the rarest and most difficult-to-treat facial conditions in the world. From Neurofibromatosis and BAM Syndrome to Treacher Collins Syndrome, their conditions have baffled the medical world, causing shock and surprise for people around them. But these incredible people haven’t let their conditions stop them from living their lives in some extraordinary ways.
Producers: Ruby Coote
Editor: James Thorne
Category
😹
FunTranscript
00:00Living with a rare condition is difficult, but for some whose outward appearance is so
00:07dramatically affected, it's inescapable.
00:11Do you like taking your ears off to sleep?
00:13Yeah.
00:14Yeah?
00:15Pink pong ball, right, like that can fit right in there, no problem.
00:20These people have some of the rarest and most difficult-to-treat facial conditions in the
00:25world.
00:27Their conditions have baffled the medical world.
00:30I was given a condition that there's no name for, so we just call it Ganesan syndrome.
00:35Shocked and surprised the people around them.
00:37There were some kids that told me, you know what I mean, looked like a monster.
00:42And made those living their lives with a dramatically different appearance very difficult.
00:47But these incredible people haven't let their condition stop them from living their lives
00:53in some extraordinary ways.
00:55I like playing my guitar and playing tennis.
01:00Get ready to be inspired by these amazing humans.
01:04A lot of people sit down and just say, you know, woe is me, but Nick has really taken
01:10it and he's made himself stronger with it.
01:13From the moment we're born, society tries to fit us in a box of what is acceptably beautiful,
01:20and I want to shatter that box.
01:25Starting with Nathan.
01:27Doctors are so baffled by his facial condition, they've been unable to name or give a reason
01:32for it.
01:35When waking up, I have to clean my eyeball.
01:38I have to make sure my right side of my face is good, nothing is broken.
01:42A lot of people don't know this type of fake eye, a lot of people think it's real.
01:46When I tell someone, oh, it's a fake eye, they're like, what bro, like what?
01:50My whole left side of my face is normal, as you can tell, ear, jaw, but on my right
01:55side, it's completely the opposite.
01:57My nose, I didn't have a nose growing up, they actually took a bone from my rib and
02:02put it on my nose.
02:04I don't have a jawline, again, this is from my rib.
02:08I was given a condition that there's no name for, obviously you can tell, so we just call
02:13it the Nathan syndrome.
02:15One thing I heard was when I was in my mom's belly, that I leaned to my right side on the
02:23wall, and that's why I wasn't developed.
02:28I've had a total of 37 surgeries.
02:31I would estimate that my surgeries cost over $1,000.
02:37We found out about Nathan's condition when I was about 12 weeks into our pregnancy.
02:43It was a second ultrasound that discovered that he was going to come with a cleft lip.
02:50The bills are endless, but it's not something that you can think about, you just do what
02:54you have to do, and you deal with the bills as they come, and as best you can as a parent.
02:59This one is actually when he's only had one surgery here, so his first surgery was to
03:06take out his eye.
03:08He had his first surgery when he was two weeks old.
03:10He was always laughing from day one.
03:14Nate, as a brother, is very energetic sometimes.
03:21He can be too much, but I love him.
03:24He's a great person to be around, and we always have fun every time we're together.
03:30Despite having to live through so many surgeries to try and create the face he has now, Nathan
03:35has an inspiringly positive outlook on his unconventional appearance.
03:40What are my favorite things about my face?
03:42Um, my fake eyes for sure.
03:44I can pop it out, make jokes to the kids, be like, boo!
03:48But, uh, so definitely one of my fake eyes, but overall it's just my whole face, honestly.
03:54I just love it.
03:55It makes me who I am.
03:58My friends are really important, I think.
04:01Besides your parents, your friends really influence the person you become.
04:04I played baseball, I was a kid for like, about eight years.
04:08Let's go play baseball!
04:12Let's go, baby!
04:13High five, baby!
04:15Right here, baby.
04:16Hold on like I'm Babe Ruth.
04:18No one's ever really told me, but I'm pretty sure there's been some girls that I've, uh,
04:23that I've liked, that I've gone after that probably didn't date me because of my face.
04:27Probably at a young age, it affected a lot.
04:29Right here, woman power, woman power!
04:31Growing up, I think girls would come to realize, you know, what's on the outside is definitely
04:35more than what's inside.
04:37He gives, like, a good outlook on life, even though it's not always the same.
04:40He gives a good outlook on life, even though what life throws at him.
04:44I know, okay?
04:45All right, never mind.
04:47No, thank you.
04:47Love you, Cooker!
04:49He's definitely a leader, too.
04:50He knows what he wants, and he knows what to do, so he's definitely able to achieve his
04:54goals.
04:54Yep.
04:56Kickcock, I just like to create content.
05:02A lot of people tell me they like what I'm doing, I'm making them laugh.
05:06Okay, ready, y'all?
05:09Let's go, let's go!
05:09I beat you in 1v1!
05:11No, you did not, bro!
05:13I know this man ain't talking.
05:14Wait, wait, I was just laughing.
05:15What are you laughing at, list boy?
05:17Bro, why are you guys taking pictures of me?
05:20Why are you talking to me like you don't look like the sloth from Goonies, bro?
05:22Well, I was just laughing.
05:29It hasn't been easy for him, but he's very strong.
05:35He teach me a lot.
05:36He teach me how to be a better parent.
05:40He was an honor roll student in high school, he's in his second year of college, he knows
05:47that there is no limits for him.
05:51If he wants something, he's going to try to attain it.
05:57I would never change anything about myself.
05:59I am proud of who I am, I'm proud of who God gave me.
06:04I don't want to change how I look, everything happens for a reason.
06:10Being positive about her unusual facial condition hasn't come as easily for Taylor,
06:16whose rare syndrome affects only one person in every three to four million people.
06:24So this was the day that you were diagnosed with a condition, and it was Friday, 13th February.
06:31I was born with a really rare neurological disorder called Nogueira syndrome.
06:35So it's basically like facial paralysis,
06:38and because of the syndrome, I was also born with an outer extremity deformity,
06:42and mine was bilateral talipes or clogged feet.
06:45And around the age of, I want to say, 11 or 12, I had a really invasive operation
06:53that was supposed to be able to make me smile, but it was unsuccessful.
06:58And getting the news, that was really heartbreaking on the day, because you sort of thought,
07:04well, what's going to happen down the track? How will she progress? What will the teenage years be
07:09like? What will her young adult life be like? And all those sorts of things.
07:17So yeah, it was heartbreaking.
07:27I think my confidence got knocked out of me as I got older.
07:31I didn't want to go anywhere because I was insecure about myself.
07:34But when it comes to physical bullying, it's tough.
07:38So I was pushed down hills. I had my bag ripped off my back, had books ripped out of my bag.
07:47I'd be walking upstairs and people would kick my knees in from behind.
07:51It was tough.
07:52Oh, of course, I would always look at people and be like, why can't I be them?
07:56Why can't I just be accepted like they are accepting everyone else?
08:05I first started the self-help journey around the age of 20.
08:12That doesn't mean I fully accepted myself then, but it's been four years of me really working hard
08:19in all aspects of my life to make sure I can live the best life I possibly can.
08:23When I started to own who I was and my appearance and everything about myself, my whole world opened
08:30up. I'd sort of started getting better at the beginning of 2017.
08:36I was contacted by someone from ParaFed Auckland, which is like the Paralympic sort of
08:42body here in Auckland, and asked if I wanted to give athletics a go.
08:47And so I was like, sure, I won't be running anywhere, but I'll throw something.
08:52So they gave me a shot put and they said, just give it a go.
08:55So I threw it and they were like, well, OK, you're pretty good.
08:59And then they measured it and they were like,
09:01oh, you've just broken the New Zealand record in your classification.
09:05Where I competed and got my classification to compete internationally and also became
09:11world number one in my classification by competing there, which was just incredible.
09:17Being an athlete has given me so much discipline and strength and confidence,
09:22and it's really set me up. And I think it really helped in terms of my recovery journey.
09:28Oh, everything's changed since accepting myself. My confidence, the way I interact with people,
09:33the way I interact with people online, being 100 percent authentic to me.
09:38Like, I'm probably one of the most sarcastic people you'll ever meet.
09:44Gosh, I know. It is so hard being ridiculously offensively attractive.
09:54Like, I get it. I'm so sorry.
09:57And to be able to showcase that, especially on platforms like TikTok, people just love it.
10:03I just don't care what anyone has to say and just go with the flow.
10:08And accepting myself for who I am was the greatest decision I ever made,
10:13and it just keeps getting better and better and better.
10:17She's got this intelligence there that is very underestimated.
10:21And yeah, mum and dad are very super proud of her.
10:25I've found myself, but I've also found my purpose.
10:28I know it sounds so cheesy, but I think it was all worth it.
10:32I'd say the main thing would be inspiring and empowering other people.
10:37I don't think I'll ever get used to that. It's something that still blows my mind today,
10:41that people can take so much from me and my story.
10:45If you'd asked me a few years ago, I would have been probably a bit annoyed or sad about it,
10:51and I probably would have wanted to get another operation that would have enabled me to smile.
10:55But now I'm so more than fine with it. I love not being able to smile. It's my superpower.
11:0613-year-old Amare has one of the most severe cases of his condition in the world.
11:15Hey, Amare.
11:18Hey, you doing okay?
11:22Okay, you ready for some lunch?
11:26I actually knew when I was pregnant with him that it was like a 50-50 chance
11:32that he would come out with his genetic condition.
11:38Amare has a condition called NF type 1, which is incurable and which causes tumors.
11:46It causes tumors throughout his skeletal and nervous system.
11:50So it just causes a lot of problems throughout his body,
11:53which the growths can come up anywhere on his body.
11:57Amare has one of the worst cases that you can get.
12:00So he was taking chemo medicine for a while, and it seemed to help a little bit.
12:06But he's not been on it for a year or so, just to see how the tumors act.
12:12Put it on there.
12:13So this year, we probably have to start him back on some kind of chemo medicine
12:19because it looks like they're starting to grow back or grow a little more and faster.
12:25It's a lot. It really is.
12:27As he got older, it got more noticeable because the tumors grew.
12:35I'm trying to not be getting emotional.
12:37It was hard. It was very hard when I found out.
12:47Amare, he's like any other young boy his age.
12:52He has limitations of things that he can and can't do.
12:57His vision is very, very limited.
13:00He only can see out the right eye, which is barely,
13:05which is kind of covered up his right eye as well because of the tumors.
13:10So it makes it hard for him to do certain things.
13:13Like he loves football, but he really can't get out there and play like everybody else
13:18because of his tumors.
13:24He really doesn't act like he have a genetic condition or anything
13:29because I look at him as a normal child.
13:32In 2017, Amare got to meet the Harlem Global Charters in Huntsville, Alabama.
13:37And he got an autographed jersey and a basketball as well.
13:42But he had a great time that day.
13:44He really did.
13:45He smiled the whole way there and all the way home.
13:48I was overjoyed because he still talks about it to this day.
13:55I'm going to pull the tape up, okay?
13:58So you can eat.
14:01We're getting ready for EJ and Louis Amare's cousin to come over.
14:06When they come over, we're going to probably go to the park somewhere
14:10and let them just have some fun together and spend some time together at the park.
14:16Hey, baby.
14:18Hey, my loves.
14:22Look at that.
14:24I pray that something can be done.
14:29It's hard.
14:30It really is.
14:32Because of how the neurofibromatosis has affected Amare's face,
14:37he's been judged harshly by people when he's been out in public.
14:41Amare, he mostly plays with his two cousins.
14:45So he really doesn't really get out a whole lot.
14:50We just like to have fun with our family and our cousin Amare.
14:55I know he has a genetic condition.
14:58I like hanging out with just the same.
15:02I like hanging out just the way he is.
15:05It doesn't seem any different.
15:09I know the last time I took him to a park,
15:12there were some kids that told him he looked like a monster.
15:17And he hasn't been back to that park ever since.
15:21So I had to tell him that he...
15:23Sorry.
15:24I had to tell him that he's not a monster.
15:32My focus is Amare and giving him a better quality of life.
15:36Because I don't want to have to focus on trying to figure out
15:40how I'm going to get this and that paid.
15:44I've made this go for me in order to
15:47just help provide,
15:49because we have a lot of lots of departments
15:51that we have to go back and forth to.
15:55He has taught me so many ways.
15:59He's...
16:01He's enthusiastic about everything.
16:03He doesn't let anything get him down, really.
16:18I just only hope that they find something
16:21that can really, really help him tremendously down the line.
16:25That can maybe even take all the tumours away.
16:30That would be a blessing right there on me.
16:37Unlike the others in this film,
16:39Tina wasn't born with a condition that has caused her facial difference.
16:47I was diagnosed with stage two nasal cancer in May of 2014.
16:54When I found out, I was devastated.
16:57Just terrified.
16:59They wanted me to have radiation.
17:02The risks were quite profound.
17:05There was a great risk to my eyesight,
17:08risk to my brain, my saliva glands.
17:11I could have ended up on a feeding tube for the rest of my life.
17:15There's got to be another way.
17:16My best chance to be cancer-free is to have the full rhinectomy.
17:20The doctor said,
17:21you're a young, attractive woman.
17:23We don't want to permanently disfigure you.
17:25I told him,
17:27I appreciate that, but what good is pretty if I'm not here anymore?
17:30I made the decision, just cut it off.
17:33I can remember
17:36holding my children before the final surgery
17:39and just breathing them in
17:41because I didn't know if I would be able to smell them ever again.
17:47I can remember the last time
17:50I was able to put my nose to warm it in the nape of my husband's neck.
17:55You hold on to what you can,
17:58especially when you're facing something like your mortality.
18:02After the complete rhinectomy,
18:04I was worried how people would react to me,
18:09particularly children, particularly my children.
18:13The first time our youngest son saw me without the gauze,
18:17he turned bright red and started trembling.
18:20And he said,
18:21oh my goodness, mommy, what happened to your nose?
18:24You need to go see Dr. Conner right now.
18:27Dr. Conner is his pediatrician.
18:29When he said that, laughter through tears.
18:35I'm sorry.
18:36I do put up a brave face and I do feel strong and I do feel brave,
18:40but I've had to fight for that.
18:43People say, well, how are you so confident?
18:45Because I fought dang hard and I'm alive.
18:49Nothing's more beautiful than alive.
18:53I'm pretty excited today.
18:55I'm going to meet my daughter, Christina, out for lunch.
19:00Hey, are you ready to go?
19:01I am.
19:02Let me grab my jacket and my purse.
19:04We're out the door.
19:05All righty.
19:06Can I have kisses, bye?
19:09You good for pop pop?
19:13The first time I saw my mom without her nose,
19:16I could tell by the way that she was looking at me
19:19that she expected me to have that wow factor.
19:23That, oh my gosh, you look so different.
19:26She's my mother.
19:28I was just thankful to still have her here.
19:30I love you so much.
19:31When I first lost my nose,
19:33I noticed that the stairs really, really bothered my family members.
19:38So what I told the kids was, well, honey,
19:39they're staring because they're trying to figure out
19:41how I still look this good
19:43and I don't even have a nose on my face.
19:45My face is without a nose and anything that's different
19:50or deformed or anything of that nature is made to be scary.
19:57Society builds it that way.
20:00After the operation to remove her nose,
20:03Tina was eventually given a prosthetic to wear.
20:05But surprisingly, she decided not to wear it.
20:09I don't know if it's that I had lived six months without it.
20:13I didn't like the way it looked.
20:15I didn't like the glue.
20:16It irritated my skin.
20:19Like I couldn't breathe when I had it on.
20:22Not physically.
20:23I couldn't emotionally breathe.
20:25But I wore it for about two years.
20:28I just don't care for it.
20:30But maybe if I could get Reese Witherspoon's nose,
20:33it could look like Reese Witherspoon.
20:35And one day I was like, I'm not doing this anymore.
20:39And I still have people that ask me,
20:41why don't you wear that prosthetic?
20:43You would be so pretty if you had a nose.
20:46I'm pretty anyway.
20:49I just stopped letting it define me.
20:51I'm proud of my mom because all the stuff she's been through,
20:55she made it through.
20:56What has that taught you?
20:58Don't listen to other people if they say mean things.
21:01I do get a lot of comments, though,
21:04where people are telling me how they're inspired by my bravery
21:09to put myself out there and no prosthetic.
21:12No conforming to what the world deems beautiful.
21:18I like to say a lot that society tries to fit us in a box
21:23from the moment we're born.
21:26And I want to shatter that box.
21:28I want to destroy it.
21:29I don't want anybody to ever feel like they're not beautiful.
21:37Like Tina, Tessa also lives without a nose.
21:41But she is one of only 100 people in the world
21:44that was born with the condition she has.
21:49It's disappointing that I can smell the good smells,
21:55but it's awesome that I can't smell the bad smells.
22:00Even if they were able to make an airway for Tessa with her nose,
22:04she still wouldn't be able to smell
22:05because she actually doesn't have the part of your brain
22:08that actually processes the smell.
22:11Tessa was born without a nose.
22:14It's a condition known as BAM syndrome now.
22:17She also has limited vision in her right eye and none in her left.
22:21And she also then will probably need some hormone replacement
22:25to start puberty.
22:29The pregnancy progressed like any normal pregnancy,
22:33which meant that when she was born, it was a huge shock.
22:38And then very quickly, you just start to be worried for your baby
22:42because I didn't know if she was going to be healthy or survive.
22:49To her parents' relief,
22:50Tessa made it through the tough first days of infancy.
22:54Because she doesn't have a nose,
22:55at eight days old, they inserted a trachea.
22:59And that helps her breathe.
23:01So this is just changing the trachea tube.
23:06And I'll pop this one in.
23:07It's too tight.
23:10Too tight?
23:11So just in the same way as most people have a mouth to breathe through and a nose,
23:17Tessa has her mouth and her trachea.
23:20So whenever you don't have your speaking valve on, Tess, what happens?
23:23My voice gets quieter and breathy.
23:27And then so this is a speaking valve.
23:29It goes louder.
23:32Yes.
23:34Healthy.
23:35Healthy.
23:35Excellent, Tessa.
23:37There are currently around 100 individuals in the world with BAM syndrome,
23:42making it one of the rarest conditions there is.
23:46Those are the pictures of your skull printed out.
23:51It's awesome.
23:53Hi, Miss Tessa.
23:55And she was the first person in the world to have a nose made using 3D technology.
24:00How are you feeling?
24:02They were able to put in a little implant behind her nose and give her
24:06this little bump that was super cute.
24:09And that was her first nose.
24:12When she was four, we went back over and they put in the larger implant.
24:17It led to some stitches reopening, some infections.
24:21And eventually, they had to make the decision to remove the implant completely.
24:27And we're all ready for surgery on Monday.
24:32And right now, she doesn't have any implants at all.
24:34So she looks very much like she did whenever she was a baby.
24:37Still gorgeous.
24:39Look, you're absolutely beautiful without a nose and with a nose.
24:44But she's really hoping that they're able to restart the process of getting a new implant.
24:51So hello.
24:51Hi, Dr. Ong.
24:53We're talking to one of Tessa's consultants at Great Ormond Street,
24:57Dr. Ong, about the next steps for Tessa.
25:00So listen, we're going to get, design a little nose for you.
25:05Yeah.
25:06And a little bit of back grafting.
25:08Do you remember that?
25:09To give you a little bit more fat just near where your nose is.
25:14There's a small risk of infection, as you know, with any plastic implants.
25:18But we'll give you some antibiotics anyway, and we'll hope to reduce that risk.
25:22Because Tessa's had some issues in the past,
25:24do you think this time then it will be successful?
25:27I think we'll be much more gentle with that skin in that area.
25:30So I'm hoping that she'll have a new little nose.
25:32Yeah, that's perfect.
25:33That's what we want to hear.
25:34And we were just looking at your very first nose, weren't we?
25:37There you go, Tessa.
25:39That's the very, very first one.
25:40Can you hold it up and show Dr. Ong?
25:44There you go.
25:45There it is.
25:46I really like it like this.
25:48Yeah, just like that.
25:50Yeah, because you were only two whenever that one was in, huh?
25:53You'll get a brand new nose.
25:56Yeah.
25:56We're not going to use that one.
25:57It's just the old one.
26:02I am excited to get a new nose.
26:05I hope it's not scary.
26:08But this time next year, is it?
26:10Yeah, they'll be able to do another surgery,
26:13and she'll be able to have her nose in again.
26:15The first thing I'll do when I get my new nose is...
26:19Oh, I've got to put my glasses on.
26:22Tessa's proved everybody wrong.
26:24She's exceeded everybody's expectations.
26:30She walks in at any room,
26:32and she can lift the mood of the room
26:34and just make everyone happy.
26:36I really can't wait for my new nose.
26:39It's going to make me really happy.
26:41While Tessa was born without a nose,
26:43Jacqueline was born with a rare condition
26:45which has affected her face so much so,
26:48she's unable to speak.
26:50My name is Jacqueline Rodriguez,
26:53and I am 16 years old.
26:59Jacqueline was born in 2001.
27:01They told us that she was born with a nose problem.
27:05And she was born with a nose problem.
27:07In 2001, they told us that she had a condition.
27:12They're now calling it lymphatic malformations.
27:16It's abnormal cells in her lymph node activity.
27:21And these cells just want to exist
27:25in her cheeks and her tongue
27:28and the floor of her mouth.
27:33When I was still pregnant with her,
27:36they were telling us that
27:38our daughter's quality of life would be poor.
27:43She may not make it to see her first birthday.
27:48They gave us a choice to end the pregnancy
27:51or continue.
27:53We chose life.
27:57They've tried to excise some of the tumor.
28:01It just kept coming, growing back.
28:03We've been working with doctors
28:05to control the growth of her tumor
28:07before it was just growing and growing
28:09and causing her a lot of discomfort.
28:13At first, she couldn't even swallow.
28:17We had to give her a formula through her G-tube.
28:22Her tissue relaxed enough
28:25where she was starting to be able to swallow
28:28just a little bit.
28:29And she kept working it, working it.
28:32Now she puts down her formula
28:35and that's all she has.
28:40My parents helped me by being my parents
28:43and try to make my life as normal as possible.
28:54The tumor has affected her vocal cords
28:59where she doesn't really have a voice.
29:02She has an iPad
29:04where she could use her speech program quickly
29:09to communicate and show us what she's thinking.
29:16I was the one who hated taking her out in the public
29:20because I didn't like people staring at her.
29:22And it was my son who said,
29:24Mom, you know, it doesn't bother her as much as you think.
29:28And I realize that now.
29:35Despite her bleak prognosis,
29:37Jacqueline hasn't let her condition
29:39stop her from pursuing her passions.
29:42Not many people can say that their life expectancy
29:45was less than a year at birth
29:47but is now thriving at how old is she?
29:5016.
29:5116.
29:53Yeah, I'm so proud of Jacqueline,
29:55especially with her recent accomplishments of playing guitar.
29:57Like each time she like learns a new song,
30:00she's so excited to show us.
30:13I like playing my guitar and playing tennis.
30:17I start playing tennis last year and it was a great year.
30:22Tennis helps with my confidence
30:25by knowing that I am strong enough to play a sport.
30:32Being a part of the tennis team
30:34and having those girls make her feel like just part of the team.
30:42I like hanging out with my teammates
30:45because my teammates were about to go bowling soon.
30:58She likes to help.
31:00She likes to help anybody.
31:03She's very good at wanting to babysit even
31:09or entertain kids.
31:13Or take care of elderly people.
31:18I want to be a nurse because I grew up in a hospital
31:22helping my nurses take care of others.
31:26Jackie's a good example.
31:28Everyone should be like Jackie
31:29because she doesn't care what anyone thinks.
31:32If she sees something she wants to do,
31:33she'll go out and do it.
31:35Like you can't tell her no.
31:37Like if she sets her mind to it,
31:39she'll try her best to achieve it or accomplish it in any way.
31:44Now that she's achieving and her self-esteem has just blossomed,
31:51it's just incredible.
31:53And I just didn't think we'd be here at this point.
31:58And I'm so grateful.
31:59I'm so grateful.
32:00Nick was born with a condition
32:02which affects people in many different ways across their body.
32:06But his effects from it have been mostly on his face.
32:09My condition grew as I grew.
32:12It's like NF1 means neurofibromatosis.
32:16Neuro meaning nerves.
32:17Fibroma meaning fibres.
32:19Matosis meaning mass.
32:21So if you imagine like a regular nerve line,
32:23my nerve line is like a normal nerve line.
32:25It's like a normal nerve line.
32:27So if you imagine like a regular nerve line,
32:29my nerve line is like, has a bunch of nerves.
32:34And for me, it's covered in a plexiform.
32:36I've got bumps around my body and stuff.
32:38I started noticing my condition probably in about seven or eight years old.
32:43The bumps here, yeah, these were all part of the condition.
32:45Yeah, that's a mole.
32:47That's different.
32:49But that's part of it.
32:50That's one of the biggest ones I have for sure.
32:52My chest has a bunch of bumps as well.
32:54When I started getting my following on social media and stuff,
32:58I always got the same kind of questions.
33:00Like the biggest one was, how do you shave?
33:03I usually say, how do you shave?
33:05Because, you know, it's just shaving.
33:07You put the shaving cream on.
33:09Just make sure you don't cut yourself.
33:11But the flaps are pretty, pretty soft, squishy and malleable.
33:16So it's pretty easy to go.
33:19It's rubbing, rubbing.
33:20You just gotta get it done.
33:24Hey Nick.
33:25Welcome.
33:26Recce time.
33:27You got breakfast?
33:27Nice.
33:29So how's it going on social media, you know, Instagram, TikTok?
33:33It's not bad.
33:34I haven't made a video for a while, but my videos still do pretty good.
33:38Not wanting to let his condition get the better of him, he took to TikTok.
33:42When I hopped on TikTok, it just took off.
33:45What I enjoy about TikTok is just the way it's helped me express myself.
33:50There's no way you just use Face ID.
33:52Dog, I'm surprised too.
33:55It's helped me get to where I am today.
34:00So it's been a while.
34:01You want to make one today?
34:03Calm down, dude.
34:04Gotta think of something.
34:04Let's do it.
34:06My little brother, he's been a rock through all this my entire life.
34:09He's always like supported me and defended me through high school.
34:13Nick was looked at in the hallways differently.
34:14It was weird because I'm the younger brother, but I try to be protective of him.
34:17We've had some problems in high school, but nothing we couldn't get over.
34:21And as brothers, that makes us stronger.
34:23Growing up, I guess looking back in retrospect, it was different than most people.
34:29But at the same time, it felt like a normal experience because it's normal for me, right?
34:35We go down there, I can pull up and say,
34:38you just got back from your mother's house.
34:41Close to the surgery, you just maybe spread the message.
34:44I don't know.
34:45So more about the surgery.
34:46What if we said, they wouldn't let me on the plane.
34:49I got to take this.
34:50There's no other way.
34:51Said you need to be double vaxxed for the surgery to fly.
34:54So you take a lot more all the way.
34:56How many surgeries do you have so far?
34:59So far, just the two.
35:00But this third one coming up this August is going to be my most extensive, biggest surgery yet.
35:07It's definitely going to be a big difference.
35:09People always say, oh, you're perfect the way you are.
35:11You know, don't let them go and stuff like that.
35:13And I'm completely comfortable with how I look and how I am.
35:17But this surgery is more so for the fact that I want the weight to be gone.
35:23And I'd love to contribute to the research and development of NF1
35:27and the surgeries that come with it.
35:30It's a good idea, I think.
35:31I hope so.
35:44I got to go all the way to Ontario.
35:46It wouldn't let me fly, so I got to take this.
35:49It's going to be a long trek, but we got this, fam.
35:52Let's do it.
35:55Yeah, I watch all of Nick's TikToks,
35:57and I think it's great the way he expresses himself on the internet.
35:59TikTok's such a massive platform, and it's getting him a lot of recognition.
36:04On TikTok, I say I love my flaps, right?
36:06So what I mean by that is that these flaps here, like,
36:09there's a few in the crevices of the flaps.
36:13Like, I'm able to hold stuff and, like, use it more like a utility tool.
36:17If I can demonstrate here.
36:20A ping pong ball, right?
36:21Like, that can fit right in there, no problem.
36:24I don't think this surgery is going to affect me too much.
36:27But at the same time, like, the last one kind of did mentally,
36:31kind of helped me get to where I am now.
36:33So I'm hoping to find out that, you know,
36:36bringing the idea that there's more to life than just living it one way.
36:40I never imagined I would get this many followers from the posting
36:44and from anything like that.
36:45Extremely grateful for what it has become.
36:48His videos crack me up a lot of the time.
36:50But it also helps a lot of people that are in similar positions to Nick
36:54and have whatever going on in their lives.
36:57And it shows them that you can do something with any adversity that you're faced with.
37:01A lot of people sit down and just say, you know, woe is me.
37:05But Nick has really taken it, and he's made himself stronger with it.
37:09If condition was all gone, I would definitely miss it,
37:12because it's part of who I am, right?
37:14And I've grown accustomed to it, and I'm a fan of it myself.
37:18Even if there was an option to get it all removed,
37:20I don't think I would take that.
37:22To still have the condition and still have that as a part of my identity
37:25is pretty important to me, for sure.
37:40We had Chloe, and Chloe was fine.
37:43And then we had Ariasha.
37:59Dwayne's had to navigate the world alone,
38:02looking dramatically different to the rest of his family and peers.
38:10Treacher Collins is a birth syndrome that affects a couple key chromosomes genetically.
38:17Cranial facial defects, which can include microtia, i.e. I have prosthetic ears.
38:25Eyesight, hearing, I don't have cheekbones, tear ducts,
38:29all sorts of cranial facial deformities that are different.
38:34And of course, that's something you're born with.
38:36And of course, the advantage for me is it makes you extremely memorable.
38:42No one has ever, ever forgotten my face.
38:45But thankfully, it does not affect your mental aptitude or your physical aptitude.
38:54My ears are magnetically attached, and I take them off every night to sleep,
38:58or when I go swimming, or when I play in the lake.
39:01So sometimes it's like being Mr. Potato Head.
39:04I gotta go to the water, go to bed, and take myself apart.
39:07I take my hearing aid off.
39:13Yeah, so I was born in 1984.
39:15And so the knowledge about Treacher Collins syndrome was very new.
39:20There was really no community.
39:22There was no Facebook.
39:23So growing up, I would get, what's wrong with your face?
39:27For me, I always fell back on self-deprecating humor
39:31to make light of the situation.
39:34So when I met Dwayne, I did not know anything about Treacher Collins syndrome.
39:37I just knew his face looked different.
39:40And I just realized that everything that I liked about him,
39:42about his personality and his character,
39:44all of that came from his life experience growing up with Treacher Collins syndrome.
39:48So if he didn't have Treacher Collins syndrome,
39:50maybe he'd be like a total jerk, and then I wouldn't like him.
39:53We've been married for...
39:55Nine years.
39:56There you go.
39:57He married this funny face.
39:59Yep.
40:06In my family, I am the first case with Treacher Collins syndrome.
40:09So there's no genetic condition before my birth.
40:13And it's our house.
40:14And right now, this picture is the room we're in.
40:17We had Chloe, and we had her ultrasound at 20 weeks.
40:20You know, we did ask the ultrasound tech, like...
40:22They're all over. They're all over.
40:25Does she have ears and cheekbones?
40:27And the tech is like, yeah.
40:28And fingers and toes?
40:29And we're like, no, seriously.
40:31Does she have cheekbones?
40:32Can you actually look?
40:33And everything looked fine.
40:34And Chloe was fine.
40:36And then we had Ariasha.
40:40I guess because we'd been there, done that.
40:42It wasn't even in our minds.
40:47I was just really thankful when Ariasha was diagnosed
40:49that she had Dwayne to look up to.
40:51And we knew everything that he'd been through.
40:55She does really well.
40:56Like, navigating the world with hearing loss.
41:01Basically, if she's not wearing her hearing aids,
41:03I just have to talk like an angry man, and she can hear me.
41:05It's mostly purple.
41:06For context, I have 70% hearing loss.
41:09So I have to wear a hearing aid.
41:11Otherwise, you're yelling at me, speaking, you know, at my face.
41:14And I try and read your lips.
41:16I don't know if Ariasha's noticed that she's different.
41:18She's noticed that I'm different, which is concerning to her.
41:22She's been trying to sell hearing aids to me.
41:24How are you hearing with no hearing aid?
41:27Does my ears work?
41:28She's like, there's no way.
41:30So she's pretty convinced that her and dad have super hearing,
41:34and the rest of us are totally missing out.
41:35How do you feel about your hearing aids?
41:38Good.
41:39Good?
41:39You like them?
41:41How do you like the headband?
41:44Good.
41:44Good?
41:46Do you ever feel funny?
41:49Yeah.
41:49Do you like taking your ears off to sleep?
41:52Yeah.
41:52Yeah?
41:53Why is that?
41:56Because then I don't hear Chloe talking.
42:07Yes, this is Ariasha's collection of headbands that I made for my daughter.
42:12And then recently, just because of the face mask issue,
42:15I've been adding little ear savers onto the headband that you can hook the face mask on.
42:21It was my idea to just try selling them and see what happens.
42:27So I make custom headbands with velvet lining so it stays on really well,
42:31and it's also soft and comfortable.
42:33A lot of color options so kids can match their outfits.
42:36I think it helps kids' confidence a lot when they're able to wear a headband that they like.
42:41There we go.
42:44Looking good there, Anna.
42:46With Ariasha getting older, Dwayne is thankful he'll be there to support her
42:51as she navigates the world looking different.
42:54I wouldn't say I'm concerned about Ariasha being bullied.
42:57Just being knowing I've been bullied, it's going to happen.
43:01That's just part of life.
43:07I think it's giving her the tools to handle bullying when it happens.
43:13There's a lot of that staring.
43:15Why do your eyes look so funny?
43:17Or what's wrong with your eyes?
43:19Why does she have those two things on her head?
43:25Chloe is just so confident and bold, so she doesn't mind jumping in and
43:30answering questions and helping her sister.
43:32Go get her.
43:34Get her.
43:36I want you to be the love of my life.
43:38The love of my life.
43:40I want you to be the love of my life.
43:42The love of my life.
43:44Love.
43:46Love.
43:48I'm not even going to.
43:50And I'm dizzy. Oh my gosh.
43:52And your ear fell off.
43:54And my ear fell off.
43:56I think it's really important for people to understand that everyone's different.
44:00I mean, this day and age, right?
44:02It's mostly just learning to tell your story.
44:04There's nothing more powerful.
44:06The Manarang family also believe they have an inherited facial condition.
44:30Out of the six children in their family,
44:32four of them are living with an undiagnosed
44:34and incredibly rare facial condition
44:36that has caused their faces to change shape.
44:58Despite many suggesting that the family have been cursed,
45:00they have realised that their condition
45:02must be genetic,
45:04as their father is also affected,
45:06but their mother is not.
45:22The family has yet to visit a doctor for any idea
45:24about what their condition might be.
45:32We're used to it.
45:34If it bothers us,
45:36like if we're tired or sick,
45:38there's a good chance
45:40that we'll go to the doctor.
45:42But right now,
45:44our condition is not affecting us
45:46and it's not bothering us.
45:58Due to the unusual nature of their looks,
46:00the family members who are affected
46:02have had to get used to people responding negatively
46:04to their appearance.
46:30When we go out of town,
46:32they've never seen us before.
46:36Of course they're surprised.
46:40This is my face.
46:42Because I'm different from my sister.
46:44This is my sister.
46:48She's different from my sister.
46:50Why?
46:52I'm sad if they're not like me.
46:56I just want to live at home
46:58without my parents,
47:00without my sister,
47:02without my family.
47:04That's why I'm sad.
47:08However, even though they look so different,
47:10the family are well-liked in their village
47:12that they live in.
47:14How are you?
47:16I'm good.
47:18How are you?
47:20I'm good.
47:22How are you?
47:24I'm good.
47:26Of course,
47:28in our hearts, we're different.
47:30But,
47:32we just have to move on.
47:34People are a gift from God.
47:38Their story recently made it onto social media
47:40where it went viral.
47:42But not everyone reacted positively to them.
47:46It went viral on TikTok.
47:50It went viral
47:52this month,
47:54if I'm not mistaken.
47:56Since it went viral,
47:58they're worried
48:00that we'll be
48:02harmed.
48:04We're just
48:06taking advantage of the opportunity.
48:08But I think
48:10this is just a chance
48:12for us to raise our
48:14dignity.
48:18Personally,
48:20in a village like this,
48:22I
48:24used to feel
48:26inferior. But now,
48:28I don't feel that way.
48:30This is just a chance for us
48:32to raise our dignity.
48:34That's how it is.
48:36We're good people.
48:38Many people know us.
48:40We can open ourselves
48:42to others
48:44to motivate them.
48:46We can do it.
48:48We have to fight for our lives.
48:50We have to be grateful.
48:52But they think that we're
48:54selling our bodies
48:56so that we can
48:58earn money.
49:00That means we're working
49:02to sell our bodies.
49:04But in reality,
49:06we're just...
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49:14And let us know in the comments.