DENVER (CBS4)– A woman who suffers from a rare disease traveled to Denver to try out a robotic arm in place of the one she lost when she was just 3.
Ashley Kurpiel was born healthy. When she was 3 doctors found what they thought were cancerous tumors and removed her arm and shoulder.
Months later they learned she didn’t have cancer but Fibrodysplasia Ossificans Progressiva, a genetic condition so rare it’s believed just 700 people suffer from it worldwide.
“I describe it today like saying I’m turning into a human statue,” said Kurpiel.
Any bruise that Kurpiel gets causes the body’s soft tissues to turn to bone.
A car crash left her leg in a locked position. Her left arm is fused to her side and her neck and back are stiff.
“Eventually I will be immobile from head to toe,” said Kurpiel.
So she makes the most of every moment and movement socializing and even surfing.
She traveled to Denver to try out a robotic arm, the creation of prosthetist Zach Harvey at the Denver Clinic for Extremities At Risk.
Through sensors placed on her left shoulder muscles Kurpiel can tell her computerized arm to move. She’s able to hold a drink and look at her phone. She can even eat finger food.
“I put a cookie in there and just go for it,” said Kurpiel.
Without a treatment or a cure she’s on to her next adventure. Despite her condition Kurpiel is optimistic.
Researchers have discovered the gene that causes FOP and now they are searching for a cure.
According to the International Fibrodysplasia Ossificans Progressiva Association, Kurpiel’s condition is “one of the rarest, most disabling genetic conditions known to medicine.” The association’s website explains that “it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.”