It's a reunion of old friends.
It's been a long time!
They all have one of the rarest diseases on earth.
My jaw is completely fused.
My leg is fused at the hip.
That's the limited motion I've got.
Their condition causes their muscles,
ligaments, and tendons to become bone
turning their bodies rock hard.
We're turning to a human statue,
we can't move.
The three friends suffer from a disease
known as FOP, there are only 700 known cases in the world.
Almost half of them are in the US.
Ashley Kurpiel lives outside Atlanta, Georgia.
As a toddler her arm was amputated after doctors
misdiagnosed her with cancer.
They missed the tell tale signature of FOP disease,
a crooked big toe.
Now her muscles have started hardening into bone.
I cannot move this arm away from my body,
it's like super-glued to my side, my upper arm
'cause it does not move.
Her neck and spine are now fused.
Five years ago, Ashley's leg got stuck
in this bent position.
It's stuck, and that thigh is rock hard bone.
A four inch platform shoe enables her to walk.
The 30 year old showed us how she uses a drawer handle
to take off her pants.
A convenient closet doorknob helps her get them back on.
This is it for movement in the shoulders.
Patrick Doerr's jaw is nearly frozen shut.
Just enough to talk.
His mom, Gretchen, a pediatric nurse,
was heartbroken when he was diagnosed.
He was 17 and big and burley,
and the next thing you know he's in such severe pain.
She watched helplessly as his muscles and joints
turned to solid bone.
Very intense swelling, very intense pain.
At 52, Nancy Sando
is one of the oldest living people with FOP.
Sinches her way toward the bed,
her body is stiff as a board.
God has given me the ability to find the joys
in the little things in life.
It's a tremendous hardship.
FOP is a devastating disease
Dr. Frederick Kaplan
of the University of Pennsylvania
is the leader in the fight against the disease,
and personally sees to every case.
We adore Nancy and Ashley and Patrick.
I mean they're all a testimony to the human spirit.
They're shining examples of what human beings can do
when their faced with such incredible adversity.
With the reunion set,
getting there would prove quite an undertaking.
Nancy and her caregiver left Michigan's Upper Peninsula,
driving three hours in her minivan.
Ashley gets a little help down the jet way in Atlanta,
then walks on board her flight and takes her seat.
Patrick boarded his plane in Philadelphia.
And when he found his seat, the 30-year-old accountant
enjoyed a drink with his own ingenious invention.
I've got a lot of pride, I have a lot of ability.
The three friends finally made it to Detroit
and settled in at their hotel.
They shared techniques for doing all the things
we all take for granted.
They gathered by the pool,
Ashley took a refreshing swim.
Dinner proves the most challenging of all
since Patrick and Nancy's jaws are all but fused shut.
They first use their lips to mash the food
against their teeth, then push it through gaps.
And everywhere they go they draw inspiration
from each other.
It helps to know that they're not alone.
The dance party is in full swing.
The DJ gets the crowd moving, shaking, and spinning.
But this is a dance unlike any you've ever seen.
The party goers were all born with a rare disease
called FOP that's caused by a gene defect
that is gradually turning their bodies into rock hard bone.
They call themselves FOP-ers, they're also known
as the human statues, or petrified people,
names they do not particularly like.
59 of these brave souls have come from across the country
to Orlando Florida for their 25th annual convention.
There are only 800 such people alive in the world today
afflicted with FOP.
We're human beings turning physically into a human statue.
32 year old Ashley Kurpiel's arm
was amputated, her leg, neck, and spine
are now rock hard bone.
Ashley came with her family.
I love my sister.
Getting into the pool isn't easy.
Ashley's game for playing Splish Splash.
It's hard for me to play with her
when I can't do a whole lot,
so at least it's something I can do with her.
Most heartbreaking of all is seeing the devastating
effects on young children.
It begins with FOP's signature diagnosis,
a crooked big toe.
The youngest FOP-er at the convention
is three year old William Hellicot from Oregon.
William's right arm is permanently stuck in this position,
his back is riddled with bone growth.
His mom Katrina says most people don't understand
what's wrong with her little boy.
"Did he break an arm or?"
So I do a lot of explaining.
You look good Chris, it looks really nice.
23 year old Chris Michelle from New Jersey
shows off a daring Victoria Secret bikini.
So sexy.
At 57, John Redding is one of the oldest
of the conventioneers in attendance.
He even crafted a spoon with a golf club to make it
easier to eat.
18 year old Brianna Lechance has to force food
into her mouth because her jaw is fused shut.
I can't open my mouth.
Dr. Fred Kaplan is the world's leading expert
on the disease.
Treating these patients requires scientific knowledge,
and a lot of heart.
Getting ready for the convention is a big undertaking.
Ashley's mom helps slip on a new robotic arm,
then it was time to join the party.
There they were, her fellow patients
having a great time on the dance floor.
Chris had changed out of her bikini,
and was wearing a zebra pattern cocktail dress,
and three year old William,
he was dancing up a storm and making new friends,
having a great time comforted by the fact
that he was not alone.
♪ That tonight's gonna be a good night ♪