ASHLEY: Basically I'm kind of turning into
a human statue, in a sense.
COMM: Ashley Kurpiel lives with a rare disorder
which is turning her muscles to bone, slowly immobilising her body. The condition called
Fibrodysplasia Ossificans Progressiva or FOP, affects roughly 800 people in the world. And
Ashley is one of three hundred cases known in the United States.
ASHLEY: We all have our own issues, whatever
they may be, some may be physical, some may be mental. This is my issue I deal with, being
having FOP and being an amputee.
COMM: Despite the fact she may become completely
immobile she's living life to the fullest and raising awareness of the condition to
help others like her.
COMM: Ashley from Peachtree City, Georgia
was adopted by her parents Carol and Fred Kurpiel at nine weeks old.
CAROL: She was very healthy, she was sweet,
she was an adorable baby girl, and we took her home and it wasn't until she was about
two and a half, almost three years old when we noticed a lump come up on her back.
COMM: At three years old Ashley was misdiagnosed
with infantile fibromatosis, and doctors amputated her arm.
FRED: We were told that she would be fine,
we could take her home at the end of the day. It was a pretty optimistic beginning and a
pretty tragic ending, on that same day.
COMM: Around six months later the hospital
in Atlanta phoned to say that Ashley was really suffering from FOP.
CAROL: I couldn't believe what I was hearing,
I was devastated, and then we didn't have computers in our homes at that time or in
the early eighties. I proceeded to go to the library and there was probably maybe five
inches of information in a text book explaining what this was. And after you peel yourself
off the wall you finally get on with it but we were told we would only have her for maybe
another two to ten years.
COMM: But despite the doctor's grim prognosis
Ashley survived and is now thirty-two years old. But it hasn't been easy.
ASHLEY: Kids were mean and cruel to anybody
that was obviously different and I had very few friends, I didn't have a social life.
Kids didn't like the girl with one arm with FOP because I couldn't do anything. Just a
very lonely life back then. I always knew I had FOP and what my life probably would
be like. My life's a lot better now than it was probably ten years ago, life changes and
evolves and meet new friends and it's not what I expected but it's a lot better than
what I expected back in the day.
COMM: She now takes every opportunity that
comes her way.
ASHLEY: Five years ago I was at an amputee
conference and I met two gentleman who took time and took a bunch of amputees out surfing
where I never thought me being with this body I would be on a board. And now I go out there
once a year and David and Van take me out surfing as my annual surf trip. I've gone
to Russia to meet another Fop girl who thought she was alone in the world like she had no
friends with FOP, knew nobody with FOP and saw one of my stories that aired in the media
and wanted to meet me.
ASHLEY: I'm really involved in both the
amputee community and the FOP community, going to many events, fundraisers for the FOP raising
awareness.
COMM: She's even met the Dalai Lama.
ASHLEY: Back in 2007 a friend of mine who's
a big contributor to the IFOPA actually, had called my mom on Sunday afternoon and said
y'know you and Ashley get ready, come up to Atlanta, you're gonna get to hear the Dalai
Lama speak, it was just an amazing unforgettable experience that I will have for the rest of
my life.
COMM: And Ashley plans to use what little
mobility she has left to continue her support of the FOP community. She's taken to social
media to help others and offer advice to people living with the debilitating disease.
ASHLEY: It warms my heart that I can help
somebody feel better about themselves, I put so many hours into talking to newly - l like
parents where their kids just lost an amputation from whatever may happen. It's changed my
world completely and fulfilled a void in my life that I really never knew was there.
EMILY: Proud doesn't even describe how I feel
for Ashley. I'm proud of who she's become and proud of just taking what she has and
making the best of it.
CAROL: Ashley is probably one of the rarest
people that I know that has the ability to keep her cup half full and not half empty.
She's a good example to all of us.
ASHLEY: I'm definitely living life as full
as I possibly can.