Ashley: I was born with FOP
and my body's turning to stone.
I know even as an adult FOP can take
away what little mobility I have left,
but I don't dwell on that.
It's going to happen whether I want it to or not.
I've been living this great life for 37 years
and this ride isn't over yet.
Whatever the world can throw at me,
I'll take on full in.
My friend’s, like I'll do your makeup for you
I’m like no it’s one of the few things I can still do myself.
Ashley was born with fibrodysplasia Ossificans progressiva,
where her muscles, ligaments and tendons are all
slowly turning into solid bone over time.
Ashley: FOP is extremely rare, they say it affects one in 2 million.
So roughly there should be like probably 1500 worldwide,
but the documented cases of FOP there's under 1000 to date.
FOP impacts my daily life pretty much all day every day.
I cannot dress myself. I can't bathe myself.
I can't do my hair. I need help in the kitchen getting
food because I can't reach things.
Carol: Using the lavatory, using tools for makeup,
We have to get those out and set up.
She can't do her own laundry.
Ashley: I'm pretty much wheelchair bound or bed bound.
I need help with everyday life where it's,
it's, it's tough being an adult not being able to take care of yourself.
Carol: There really is no walking for her.
If there was an emergency she would never be
able to escape on her own.
She has to have someone with her constantly. 24/7.
Ashley's condition is progressing.
It is getting worse.
Ashley: Four years ago I was featured on born different.
Back then I was walking I was more independent and more mobile.
I have now lost all mobility in my body,
Despite the fact she may become completely immobile,
she’s living life to the fullest.
Carol: Ashley's condition has impacted my life.
Probably everybody in the family's life, if you will.
I do have a lot of help with family.
Emily: Good to see you. Ashley: You too.
how are you today? Ashley: Good.
Carol: My daughter, her husband, my grandchildren,
they're all there.
Actually wait until you see what your sister found.
Emily: Pictures.
Ashley: I say I feel like a burden. I know I'm not a burden on my family,
but it's you know, I can't survive without the help.
I'm very blessed to have the family and friends I do
that love me and take care of me and support me.
Carol: Oh my gosh.
Ashley: It's made me the woman I am today.
So I just I wouldn't be who I am without them.
Emily: This is one of my favorites of you surfing
like... Ashley: And I can't swim.
Emily: Like I'm just I'm so proud of you from where you come
and how far you know how far you've come.
So it's pretty dang amazing.
Ashley: That was an incredible day I'll never forget that.
Who would have thought that I would ever be on a surfboard?
Like not me.
Carol: Ashley has coped with her condition
throughout the years remarkably well.
There are many heroes out there with FOP,
but because she has FOP, and she's an amputee,
she does very well.
When Ashley was three years old,
she had developed a large lump on her back,
and she was misdiagnosed with fibromatosis.
This resulted in her having her right shoulder and arm amputated.
Carol: It was probably six months later,
after a follow up a local clinic we discovered
that they discovered that what she actually had was FOP.
Of course that was shocking news to us.
There was so little information out there on the disease.
Ashley: With my misdiagnosis and the amputation,
I'm the most exacerbated most misdiagnosis case out there
and we need to find those other people with this condition
that don't even know they have it just so
they won’t have to go through un needed surgeries.
We can get to try and find this treatment and cure to try
and stop this from happening.
The amputee group that I started October of 2018.
Today we have roughly 23 active members.
We are here tonight to have our monthly
unlimited and the bubble amputee group meeting.
Being at some of these events before with people,
it is it's awesome to be in a place where,
these people know exactly what you're feeling
and what you're going through.
Like, nobody else can understand it any more
than the people at this table can.
Ashley: I started this so because I grew up this way,
amputee life is just my normal.
But these people that go through it later in life need that support.
And it's like it's family.
So we started this group and it's been amazing.
We have just a great load of fun.
Man 1: People that are not amputees they haven't dealt with it.
There's always like that white elephant in the room.
We're not we don't have those barriers.
We can talk about anything with each other.
Man 2:And we were taking our prosthetics off and just throwing them in the sky.
Carol: We’re very proud of Ashley, working this, this little group
that she's gotten together.
Ashley: It feels extremely wonderful helping others,
whether it's amputee families or FOP families,
I anytime there's a new FOP member or group or child
in our Facebook group, I always reach out to the family right away.
It's not the end of the world.
They can live and survive and be happy in life.
Emily: I used to be a lot bigger than that.
Ashley: Despite what FOP does to them.