Chelsey: The whispering, the ogling by grown adults is what drives me mad.
High school sucked.
There was clubs against me
and it was called the Chelsea Haters Club.
I am actually feeling a little nervous
because I have to go for my first real photo shoot.
Hi, I'm Chelsey.
I am 34 years old.
I was born with a rare condition known as
Sturge Weber syndrome.
That affects probably one in 50,000 people.
Also, I was born with a large port wine stain birthmark
on the left side of my face
that also includes glaucoma in my left eye.
Ione: I've always said her birth I'll remember it,
even if I get Alzheimer's.
She was my first baby,
so it was it was a long traumatic birth.
And then she had the birthmark of course.
Well I was 19.
So, you know, young
Chelsey: About the age of 10 months,
I began to have seizure activity,
which increased and increased to the point that I was dying.
Ione: The medications they were giving her, nothing was stopping the seizures.
They said it would kill her,
that they had to do a brain surgery.
That was very scary.
Chelsey: They told my parents
that I had a 50% chance of living through the procedure
and if I made that, I had a 50% chance of being mentally stable.
Ione: We were married too, that's not too long after.
Chelsey: Yeah, the shaved head, I know, I noticed that.
I had my occipital lobe removed.
That is a MRI image of my brain
showing the liquid filled area where I had a piece of my brain removed.
But you can see the different sizing of the brain
due to the Sturge Weber like how it's not even on both sides.
So a little bit of field vision lost in both eyes
I might have an occasional headache, I have the glaucoma.
But I will take all of that happily
compared to what I could have if I kept going,
I beat all the statistics.
And I continued to do so.
High school sucked. I already had the issues with being different
with how I look. I didn't really have that social life.
I didn't have that date for grad, I didn't have that date for dances.
It was segregation.
There was clubs against me.
And it was called the Chelsea Haters club.
And it got so bad for a few weeks at school
that even like with my best friends joining in stuff,
I had rude notes stuffed in my locker,
I had horrible things drawn on my books.
It was not a fun time.
I've struggled with some mental health in the past.
It got dark. It got scary.
There was times, you know, I didn't want to leave the house.
The whispering, the ogling by grown adults is what drives me mad.
I've had people actually come up and ask me if it's infectious.
I've had people ask if my eye is going to pop out of my head
and if I need medical assistance.
It's gotten to the point though I've actually told people
"If you're going to stare,
either ask for my autograph or take the damn picture."
When it comes to my family, they have been my rock.
I have great support.
I don't know, I never ever felt like I had a birthmark around any of these people.
You got the jokey.
Chelsey: I have a joker. Yes.
My husband - People would look at him.
Look at my baby bump and just be aghast.
So they expected me to just be like the
Hunchback of Notre Dame and hide out in the basement somewhere, you know?
So today I'm going over to visit one of my 'birthmark buddies'
is what I call them.
Chelsey: I do follow a lot of birthmark support groups.
Sturge Weber ones, port wine stains.
Cash was born with Sturge Weber syndrome like myself
and I was able to meet his mum
through one of our groups.
When she reached out to me through Facebook,
it was incredible to know that I would be able to meet
someone with my condition.
I'm being this almost role model
for these young people with their facial differences.
I never had that.
Jami: It was a shocker to find somebody here that
that had it as well.
Now I super make it a point
if I see somebody with a birthmark, I'm like,
"I love your birthmark."
And they're like,
Filled with new emotion as I just visited with Cash
and just being reminded how
Sturge Weber affects individuals in different ways.
You're just having fun feeding them you don't even...
oh my goodness.
Just finished up though seeing a little birthmark buddy of mine
so makes the whole day worth it.
That's awesome.
Chelsey: He has the same condition as me.
Chelsey: I'm just starting to warm up to the idea of
self-image and being comfortable with yourself and your skin.
And I've never really felt comfortable.
I am actually feeling a little nervous
because I have to go for my first real personal photo shoot.
I want to take this time to do something that's been on my wish list for years.
It's hard growing up when
society, movies, everything portrays anyone with a facial difference as a monster.
Being an ambassador for people with facial differences has given me the strength to do this.
Chelsey: Strange and exciting to be the center of attention. Yes.
And it not be a medical thing.
Ione: A lot of people,
they don't go through what she's gone through in their whole lifetime.
And she's able to go to college and have two beautiful children and a marriage.
And all this with the internet,
how she's helping others.
I'm beyond proud.
Chelsey: I am perfectly comfortable with how I look right now.
I'm sorry if some people aren't