00:00 I've dealt with this for 23 years.
00:02 I've had the stares and like,
00:04 I don't like to be the most different
00:05 'cause like we're not different,
00:07 like we're still the same.
00:08 And I am who I am, like, don't like it.
00:11 Tough.
00:11 Tetrachlorus syndrome is a genetic condition.
00:15 I was the only one in my family with the condition.
00:19 I was born without no ears, no cheekbones,
00:21 and a receding jaw.
00:23 I've had over 30 operations.
00:26 I have my jaw broken three times.
00:29 We had to turn the screw,
00:31 so in effect, breaking your jaw every day for two weeks.
00:35 My hair gets so frizzy.
00:39 I can't stand it when it goes messy.
00:42 That is a wig, mate.
00:43 Like, that's not my normal hair.
00:45 I'm Ashley Carter, and I have Tetrachlorus syndrome.
00:49 I was born without no ears, as you can see here.
00:52 I've got both bone antiterorities on both sides.
00:55 The surgeons literally put in a titanium screw,
01:00 and this is where it attaches here.
01:03 Turn it on, and I can hear.
01:07 It's been very difficult
01:08 because I just wanted to fit in with everyone else,
01:12 but I always felt, like, left out.
01:14 It all stemmed from school.
01:16 I knew that I looked different
01:19 to the other children in the school.
01:22 Trying to mix in with other people,
01:24 trying to not get involved.
01:25 I had urinalium, urogyny.
01:29 It would happen on a daily basis.
01:31 I would sit and eat my lunch,
01:32 and I would get food chucked at me.
01:34 They would punch me, kick me.
01:36 They would pin me up against the wall,
01:38 and I just said to my mum that I cannot do it anymore.
01:42 I didn't want to go out
01:43 because I was worried about,
01:45 "What if this happens?
01:46 What if that happens?"
01:48 I just wanted to be at home all the time.
01:50 I lost my confidence.
01:52 The lack of interest in things.
01:54 I just wanted to be at home in my safe place.
01:58 I will never, ever forget the people
02:00 that made my life hell growing up.
02:02 I started posting about a couple years ago,
02:10 and it's all about raising awareness about my condition.
02:13 I'm going to be sharing some of my stories.
02:16 Just because we're born different,
02:18 we're still the same people as everyone else.
02:21 It means so much to me that I've got my support out there.
02:24 Some of the lovely comments I've had,
02:26 and you all have been really lovely,
02:29 and it's actually helped me climb a lot.
02:31 I have received negative comments online.
02:33 "Can people not comment or judge my videos by the way I look?"
02:38 "Looks like you've been putting it in the oven."
02:40 "Looks like the sun has melted you."
02:42 Seeing the comments, it got me down.
02:45 I'm not going to say it hasn't.
02:46 I don't think it would to anyone.
02:48 What I tend to do is I just delete the comments
02:50 because I don't want my family, my friends to see it.
02:54 This is Bradley here.
02:57 Even with normal shoes on, he still over-tallies me.
03:01 I think my brother noticed it more when I would come home.
03:05 Quiet, upset.
03:07 Hello.
03:10 - How are you? - Come in.
03:11 - Alright? - Yeah, I'm alright.
03:13 Do you want a coffee?
03:15 Go on.
03:16 I'll get you a coffee.
03:17 Bradley can be very protective when he realises that I've been picked on.
03:22 Straighten your hair, it'll take about an hour.
03:26 No, it does not.
03:28 Get out of the shower, straighten your hair.
03:30 - Don't talk stupid. - Blow dry it, whatever you want to do.
03:32 - Brush it. - Don't talk stupid.
03:34 Why are you sat in a shoe?
03:36 Because I wanted to, alright?
03:37 I did see from an outside point of view all the bullying.
03:41 It angered me a lot.
03:42 I just wanted to be there for Ash.
03:45 But obviously being five years younger, it's kind of hard.
03:47 Just that thought, I look so chubby.
03:49 Brr.
03:52 I just want people to be treated the way that they want to be treated.
03:56 Yeah, me too.
03:57 So when I go out, even if it's to the shops,
04:03 even if it's to the pub, even when I'm in the car,
04:06 I get the notes.
04:08 I get the stories.
04:10 And I sometimes do get the comments.
04:12 And I just want people to understand that
04:15 just because I look different and I have a facial difference,
04:19 I'm actually a genuine nice guy.
04:21 Lovely to see you.
04:26 Dad has been very supportive.
04:28 When we found out that Ashley had Treacher Collins syndrome,
04:33 we were shocked.
04:34 But you were really, really cute.
04:37 - Cute? - Yeah, cutie.
04:41 Not a lot of people knew about Treacher Collins syndrome
04:47 because it's a syndrome that is just one in 10,000 people.
04:51 So he was a bit of a guinea pig.
04:53 Obviously, you were very young.
04:55 So we had to turn the screw on this frame that was inside your jaw.
05:01 And we had to do that every day.
05:03 Due to having such narrow airway, I couldn't breathe.
05:07 I turned blue.
05:08 And they gave you an external frame.
05:10 So that brought your jaw forward by two centimetres.
05:15 And then that opened your airway up.
05:19 And then they could take your tracheostomy out.
05:24 Yeah.
05:26 Which was deep breath time.
05:29 You'd never breathed unaided, really.
05:32 I didn't breathe on my own.
05:34 You were breathing on your own.
05:36 It was quite scary, actually.
05:38 Because you had to have stents put in your eyes
05:41 because you didn't have any tear ducts.
05:43 Morsel stents.
05:44 It's a little tube that you put into the eye
05:48 to make a little channel so that you can make a tear duct.
05:52 Sleep, you could only lie on your back.
05:55 Was that the most recent one?
05:57 That was the most recent one.
05:58 Yeah.
05:59 I remember that.
06:00 I was in a coffin.
06:01 You were like that, yeah.
06:03 I was a female, and I had to sleep like that.
06:07 We were about a week away from actually taking you to London
06:11 for prosthetic ears.
06:14 They can literally make ears.
06:16 I haven't had ears for 23 years.
06:18 I could have a chin implant if I wanted,
06:21 but I'm not going to.
06:23 You said, if people can't accept me for what I am
06:27 and the way I look, then they're the ones with the problem.
06:31 And that's the way it's been for practically
06:35 the whole of your life.
06:36 There were some really horrible operations
06:38 that you had to go through.
06:39 And we didn't know what was going to happen.
06:47 With me being picked and growing up,
06:49 I do wish I'd told my dad earlier.
06:51 I wish I'd told my mum earlier, because maybe things
06:56 might have got sorted quickly.
06:57 But Ashley kept a lot of it very quiet.
07:01 He used to come home, go straight to your bedroom,
07:03 thinking, oh, he's up there doing his homework.
07:06 I was in that state of mind, thinking,
07:08 if I tell anyone, is it going to get worse?
07:10 Is the bullying going to get worse for me?
07:12 To know that he was hiding things like that from us
07:16 and all we wanted to do was to make it right.
07:21 Throughout your life, you've been so brave.
07:26 I'm very proud.
07:27 I'm very proud of him.
07:28 He is just a good role model.
07:31 And generally, people love him.
07:35 I've had my good moments, but I've had my bad moments.
07:38 We are who we are.
07:39 We are living the life that we want.
07:42 I think from now onwards, life is looking up.
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