- My family has always been told we're so beautiful,
and I always felt like for me, it was from the neck up.
So I was born a happy, normal baby.
My mom would describe me as perfect,
but about two weeks after I was born,
she noticed that my hands were different sizes,
and they found out that I was born with a rare bone disease
called Ollier's and Maffucci's syndrome.
I can remember playing in the snow during winter,
and my aunt said something like, "Oh with that snowsuit on,
"Ash looks normal."
And I remember one time when I was getting my jeans hemmed,
the tailor, he was at the bottom working on my pant leg,
and he was like, "So what happened?"
And the only answer I can really offer
is I was born this way,
and I can remember him shaking his head,
and he's like, "That's too bad
"because you have such a pretty face."
So in 2005, that's when social media entered my life.
I started getting all this attention from guys
who were like, "Come to this party," or whatever,
and it wasn't something that I was used to, and I noticed
that when certain pictures of mine were cropped,
you couldn't tell that I had a bone disease.
I was normal.
I was Ashley in a snowsuit.
I was Ashley with the pretty face.
There is this sense of fear
because I felt like if people knew the real me
or saw all of me, they wouldn't be interested,
which sometimes was true.
Someone would tag me in photos,
and I would have this panic attack.
Text my friend, "Please take it down, please take it down."
Then about a year ago at three a.m.,
I am scrolling through Facebook,
and I come across this group for my bone disease.
It kinda blew my mind
because I have never met someone with my disease.
There is only 200 documented cases in the world,
and I'm just looking at this like,
"Wow, there is people out there who are like me that exist."
And then I see this mom who posted these pictures
of her daughter who's six or seven, and she's beautiful,
and I'm looking at the photo, and then I see it.
I see that her hand looks exactly like my hand,
the hand with bony tumors, the misshapen fingers,
and it's the hand that I hate.
And I just sat there in my apartment,
and I just started crying
because I imagine this little girl
looking at my social media-cropped Ashley
being like, "She doesn't know.
"She's not like me.
"She's normal."
But I wanted her to know that I am like you,
I'm exactly like you, and I know what it's like.
It's ironic because your social media,
this thing that I was so terrified to be judged on,
now it's the bridge for this sense of hope and inclusion.
It was that moment that I decided that I needed to stop
trying to hide myself,
and I'll be honest, it's a struggle today.
It still is.
But I think about this little girl at six or seven,
or I think about myself at six or seven,
and what it would have been like
to have someone as a role model to say, "I'm here.
"I'm living this life.
"I'm happy.
"I'm thriving.
"You'll get through it."
So that's kind of what I'm doing.
This is me being vulnerable with the hope
that it will help someone else be brave.