"I am Turning Into A Human Statue"
By Samantha Grillo @_samanthagrillo
Scroll down for the full story
Videographer / Director: Dre Barnes
Producer: Samantha Grillo, Nick Johnson
Editor: Sonia Estal
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.
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.
“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.
“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.
“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.
“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.”
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, 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.”
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.
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.
“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.”