Only 93 People In The World Have My Condition | BORN DIFFERENT

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