By Samantha Grillo @_samanthagrillo

HUMAN statue Ashley Kurpiel suffers from a rare condition that is turning her muscles to BONE

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Videographer / Director: Dre Barnes
Producer: Samantha Grillo, Nick Johnson
Editor: Sonia Estal

Ashley Kurpiel was adopted by parents Carol and Fred Kurpiel at nine-weeks-old
In 2013 Ashley traveled to Russia with friend David Paskowitz to meet another woman with FOP

The illness, called Fibrodysplasia Ossificans Progressiva affects about 800 people worldwide. 

The incurable disease slowly turns muscles into solid bone - and has already cost Ashley her right arm. 

Ashley with friend Shawnie Whitaker at Cocoa Beach, Florida

While the disease can leave sufferers completely immobilised, Ashley has vowed to live life to the fullest. 

She said: “When I was about two and a half doctors diagnosed me with cancer. 

FOP slowly turns muscles into solid bone - and it has already cost Ashley her right arm
While the disease can leave sufferers completely immobilised, Ashley has learned to live life to the fullest

“They went in to remove what they thought was a tumor - and told my parents that it spread and they my arm needed to be amputated.

Ashley met the Dalai Lama in 2007 in Atlanta, Georgia

“Five months later, doctors called and said cancer was a misdiagnosis and that I had a rare disease that affects one in two million people. 

“I am growing a second skeleton in a sense, becoming a human statue physically.

FAMILY SUPPORT: Ashley lives with mom Carol Kurpiel and dad Fred Kurpiel who help her daily

“Many others living with this lose all mobility, head to toe, and their jaws have locked shut. 

“At 25 I lost mobility in my right leg and had to learn to live life and how to move around.

Ashley stays positive and takes advantage of the mobility she still has in her body
Carol and Fred Kurpiel posing with Ashley outside their home in Peachtree City, Georgia

“I don’t know how much longer I will have movement in my body, so I want to experience as much as I can now.” 

Ashley holding an alligator during the NubAbility Kids Winter Baseball Clinic in Florida, USA in December 2014

The condition arises from a mutation of the body’s repair mechanism which causes muscles, tendons, and ligaments to convert to bone material when damaged.

Ashley poses with friend Cindy Ferst after they completed the Electric 5K run in 2013

Ashley, from Peachtree City, Georgia, first started experiencing the symptoms of the disease as a teenager. 

She said: “I began to feel my body stiffen gradually - I had been told it was going to happen but once I started feeling the symptoms I wanted to experience everything life had to offer before it was too late.”

Ashley holding a snake in Venice Beach, California in July 2015

Despite the fact that her body is locking up, Ashley has found time to experience all life has to offer.

Her friends have helped her skateboard for the first time, she goes surfing annually and she travels the world. 

Ashley poses with her proud parents outside their home in Peachtree City, Georgia

She has also completed a five kilometer course in a wheelchair, and has become an ambassador for amputees and families affected by FOP. 

Ashley said: “I’ve been blessed to meet so many truly amazing people, especially the Dalai Lama. 

An x-ray of Ashley's arm taken September 2015

“I attend many events all year round for the IFOPA, and talk to other people who are suffering. 

“I spend a lot of time on social media answering messages that families send me regarding FOP and I try to help as many people cope with the disease as possible. 

“I look for the positive side of things - I’ve had my hardships and never know what the next day will bring, but I take each day as it comes.”