ASHLEY is one of only 93 people in the world known to have Nager syndrome, an incredibly rare craniofacial condition that affects the development of the face, hands, and arms. Ashley says "I feel really unique when I know that there's less than 100 people that have my condition... and I kind of like that". Ashley’s forearms are significantly shorter and she was born without a jaw or thumbs - so when she was younger, doctors have repurposed parts of her skull to create a jaw and rotated her index fingers to create thumbs. Ashley has had 35 surgeries and spent long periods of her childhood in hospital. Growing up, she was bullied at school - "They would call me names like 'T-Rex', 'alien'... I was crying every night" - and dating was always difficult for her. She remembers "a lot of times where people didn't really give me the chance". Ashley met her partner, Matt, online 14 years ago and remembers how he "didn't really treat me like I was different" before officially becoming a couple when they finally met in person in 2019. However, when Ashley and Matt are out in public, they regularly receive stares - something Matt cannot stand: "It gets me really frustrated... I don't like it at all". Knowing that Matt has her back has given Ashley a newfound confidence though: "All I feel is amazing to know that I have a significant other who supports me... we are like partners in crime". And recently, that confidence has skyrocketed further - when Ashley found a local dance teacher whilst scrolling on TikTok: "I saw Rick, I just loved everything about him - his environment, his attitude". Still, she remembers feeling "very nervous putting myself out there. I didn't know how people were going to react to me physically". Rick worked with her to find her own unique dance style: "Ashley's body is built differently so she's obviously going to have a different sense of balance, but as she gains more of her own footing, she's able to make the moves more of her own". And when Ashley started posting her dance routines on social media, she received a hugely positive response - something Rick attributes to the fact that "she's continuing to take away excuses where other people come up with syndromes for themself and say 'I have two left feet, I can't dance' - Ashley's standing up here with Nager syndrome and is doing it". All of this has led a "complete 360" and Ashley is now able to look at her condition from a new perspective.
Follow Ashley on Instagram: https://www.instagram.com/turnitupwithash
Follow Ashley on TikTok: https://www.tiktok.com/@turnitupwithash
Follow Rick on Instagram: https://www.instagram.com/bigkidrick
Follow Ashley on Instagram: https://www.instagram.com/turnitupwithash
Follow Ashley on TikTok: https://www.tiktok.com/@turnitupwithash
Follow Rick on Instagram: https://www.instagram.com/bigkidrick
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FunTranscript
00:00 I was born with Main Ear Syndrome.
00:02 My condition is super rare.
00:05 As far as I know, there are only 93 known cancers
00:09 in the world.
00:10 I was in and out of the hospital as a child.
00:14 People don't expect me to be an advancer
00:17 because of my condition.
00:19 I love to prove people wrong.
00:22 There are times where me and Matt are out
00:24 trick-or-ghosting.
00:26 - I don't like you.
00:27 At all.
00:29 (rain falling)
00:32 (rain falling)
00:34 (rain falling)
00:37 (rain falling)
00:40 - I just haven't found the right studio
00:42 that I felt comfortable in.
00:44 So I was scrolling on TikTok one day
00:47 and I saw Rick.
00:48 And this bloke, like everything about him,
00:51 his environment, his attitude,
00:54 the way he runs his class, it's just amazing.
00:57 I've been doing it for, going on three months now
01:02 and I haven't stopped.
01:03 I've been dancing constantly, everything I studied.
01:08 I was very nervous putting myself out there.
01:11 I didn't know how people were gonna react to me physically.
01:15 They were like, "Well, she can't do this.
01:17 She can't do that."
01:19 - Hips and throw, head, head, cross, cross,
01:22 open, open, scoop.
01:24 It does take a certain amount of courage
01:26 to show up for any dance class,
01:28 to risk making mistakes,
01:31 and to stand in front of a room and say,
01:32 "Here I am just trying as best as I can."
01:35 Ashley's body's built differently,
01:37 so she's obviously gonna have a different sense of balance.
01:40 Knee, turn.
01:41 But as she gains balance and gains her own footing,
01:45 she's able to make the moves more of her own
01:48 every single time that she executes.
01:50 Sweet, hell yeah.
01:51 Got it.
01:53 - Major syndrome is a cranial facial inflammatory
02:07 in the face, arms, and hands,
02:09 and there's only four in a hundred cases in the world.
02:14 My arms are short,
02:16 so there are things I cannot do for myself.
02:19 I had to learn from figuring out ways
02:24 to make it work for myself.
02:30 So, like, every single time,
02:31 I would have to stay at another school.
02:34 I just had to learn by thinking outside the box
02:37 on how to adapt to the outside world.
02:40 When I was born, I didn't really have a jaw,
02:46 so I had to take bone from different parts
02:50 of my, mainly my head,
02:53 and make implants and rip it off,
02:56 and then just extract it to make it more outward.
03:01 And then I had surgery on my cheeks
03:03 'cause I didn't have any cheeks, nose,
03:07 so I had to implant those,
03:09 and I had other facial surgeries,
03:11 other stomach surgeries,
03:12 and then I had surgeries on my hands
03:15 where they took both of my index fingers
03:19 and they rotated them into my thumbs.
03:23 It was challenging because I was the only one
03:27 who had major syndrome.
03:29 So, a lot of friends and family from school
03:33 would make fun.
03:35 They would call me names like T-Rex,
03:38 and then really, really sad.
03:42 Like, I was crying every night.
03:45 I just had a hard time,
03:48 but I didn't let it affect my schooling.
03:51 Growing up in the inner world was a little bit tricky.
03:54 There were a lot of times
03:56 where people wouldn't really give me the chance
03:59 to, like, get to know me or get to know them,
04:02 and it just kinda hurt
04:04 because it felt like they were
04:07 judging me for how I looked
04:09 rather than trying to get to know who I am as a person.
04:13 So, that was a little tough.
04:16 Matt!
04:17 - What's going on?
04:18 - My roots.
04:19 - Oh, worried for your hair now?
04:20 - Yeah. - Okay.
04:22 - Me and Matt met online 14 years ago.
04:26 We were best friends for a very long time,
04:30 and then in 2019,
04:33 we officially met in person for the first time,
04:36 and then we've been dating ever since.
04:39 - Thank you.
04:40 - Beautiful.
04:41 - Thank you.
04:42 - He didn't really treat me like I was different.
04:46 He treated me like a human being
04:49 who would treat someone else,
04:51 and that's what really got me attracted to Matt
04:55 because he was so different
04:57 from the other boyfriends I had.
04:59 He literally picked me as a whole person.
05:03 He'll help me with all kinds of stuff, really.
05:07 I mean, he'll help me with everything if he can.
05:09 - I help Ashley with her hair,
05:11 putting on her top if she needs help with her top.
05:14 Just basic things that would require extension and height.
05:19 - Sometimes, like, in more physical aspects of it,
05:23 it's so bad for having to ask him to help me all the time.
05:29 But he doesn't seem to mind it,
05:31 so it makes me feel better
05:33 that I have someone like him to look at and take care of
05:38 if I have to have help.
05:39 - Everybody needs help in life.
05:41 - Yes, sir.
05:42 I feel amazing to know that I have a significant other
05:47 who supports me in what I wanna do,
05:51 and I support him,
05:53 so we're like partner and tribe,
05:56 if you wanna call it that.
05:58 Matt is my life.
06:01 He's everything.
06:04 - You want crushed ice or ice?
06:08 - Crushed.
06:09 - Crushed ice it is.
06:11 Got the big old fancy pours.
06:17 (laughs)
06:18 - Yeah.
06:19 - Saloon.
06:20 - Saloon.
06:20 There are times where, like,
06:24 me and Matt are out doing something
06:26 or I'm doing something when I say,
06:28 "Yeah, take me to the store."
06:31 - It gets me really frustrated.
06:33 There's definitely times that she has to hold me back,
06:37 because if we're at a grocery store
06:40 and someone is just looking at her for no reason,
06:43 trying to judge her,
06:45 I just ask if they got a staring problem,
06:47 or do we need to go have a talk somewhere?
06:50 So I don't like it, at all.
06:54 Comment or anything like that,
06:56 especially on social media,
06:59 where people would make inappropriate comments,
07:03 and I don't really let it get to me.
07:06 Like, I don't, I don't move into that type of environment,
07:11 so I just kind of shrug it off and let it go.
07:14 People with physical disabilities can also do things,
07:23 even if it's, like, acting a different way
07:26 to make the dance room happen.
07:29 I feel like I'm on a pole line when I'm dancing.
07:33 I don't feel nothing.
07:34 I just feel freedom.
07:36 I feel the music.
07:38 I don't feel nothing but music when dancing.
07:41 - I love when Ashley posts her dance routines
07:44 on social media.
07:45 I know she gets an outstanding response every single time,
07:48 but what I love most about it
07:50 is that she's continuing to take away excuses,
07:54 where other people come up with syndromes for themselves
07:57 and say, "I have two left feet.
07:59 "I can't dance."
08:00 Ashley's standing up here with Negger syndrome
08:03 and is doing it.
08:04 She's executing the moves,
08:06 despite what limitations her body might give her,
08:09 and by doing that, she's inspiring other people
08:12 that are just like her,
08:13 other people that have bodies that are different than her,
08:16 and people that might be self-conscious
08:18 to show up for their first class.
08:20 (gentle music)
08:23 - Like, I'm an animated to do that,
08:25 to show people, "Hey, this girl can really,
08:28 "and she's got Negger syndrome.
08:30 "If she can do it, I can do it."
08:33 And that's the main reason why.
08:36 I do like the fact that I was born different
08:39 just because it's brought out so much confidence in me,
08:44 I guess you could say,
08:46 and now it's just like a complete re-fix me.
08:51 I feel really unique when I know
08:54 that there's less than 100 people that have my condition,
08:58 but that just means that we're special,
09:00 that we're one in a kind,
09:02 and I kinda like that.
09:04 (gentle music)
09:07 (gentle music)
09:09 (gentle music)
09:12 (gentle music)
09:15 (gentle music)
09:17 (gentle music)
09:20 [BLANK_AUDIO]