This issue, in our weekly showcase from our sister site Truly, Ashley tells us all about what drives her passion
Arriving home from school, Ashley buried her head in her pillow and just sobbed.
Once again, all the name-calling had just got too much.
‘T-Rex’ classmates taunted her. Or ‘alien’.
The bullying felt relentless to her.
‘I was crying every night,’ says Ashley. ‘Really, really sad.’
She was the only one at school born with Nager syndrome.
No surprise, considering she says only 93 people worldwide are known to have the incredibly rare craniofacial condition.
It affects the development of the face, hands and arms. For Ashley, that meant 35 surgeries and spending 34 long periods of her childhood in hospital.
‘When I was born, I didn’t really have a jaw,’ she says.
‘So they had to take bones from different parts of mainly my head, and they implanted a jaw and then just extracted it to make it more outward.
‘And then I had surgery on my cheeks because I didn’t have any cheekbones.
‘They had to implant those.
‘I had other facial surgeries, other stomach surgeries.
‘Then I had surgeries on my hands, where they took both of my index fingers and rotated them into my thumbs.’
But as she grew up, Ashley learnt to adapt to the world around her.
I feel like I’m on cloud nine when I’m dancing – I feel free
‘My arms are short, so there are things I cannot do for myself,’ she says.
‘I had to learn ways to make it work.
‘If I wanted to reach something high I would have to stand on a stool.
‘I just had to learn by thinking outside the box on how to adapt to the outside world.’ Yet school was challenging.
‘A lot of ups and downs in school. People making fun,’ she said.
‘I just had a hard time but I didn’t let it affect my schooling.
‘The dating world was a little bit tricky too.
‘There were a lot of times where people wouldn’t really give me a chance to get to know me, or get to know them.
‘It just hurt because it felt like they were judging me for how I looked rather than trying to get to know who I am as a person.’
Then, 14 years ago, Ashley met Matt online.
‘We were best friends for a very long time, then, in 2019, we officially met in person for the first time,’ says Ashley.
‘We have been dating ever since.
‘He didn’t really treat me like I was different.
‘He treated me like a human being should treat someone else – and that’s what really got me attracted to Matt.
‘He was s
