Fight For Ordinary Life For Girl Suffering Rare ‘Stone’ Disease
A 5-year-old girl from Bellevue, Ohio is facing a race against time for a cure to her extraordinarily rare ‘stone’ disorder, which is causing her muscles and ligaments into solid bone.
This disorder, known as Fibrodysplasia ossifans progressiva, or FOP, is also called ‘Stone Man’ syndrome because it causes the sufferer’s body to gradually harden over time until they are rendered incapable of movement.
The disorder is very rare: doctors and scientists estimate that it strikes one person out of every two million, and there are roughly 700 cases that have been confirmed around the world.
Ali’s parents, Gabe and Angela McKean, have gone public about their daughter’s condition in an effort to raise funds for research into developing a cure for this rare and life-threatening disorder, as well as for Ali’s medical treatment, which is proving incredibly extensive and costly for the family.
They run a website called Alis-Army.org to help spread word about the disease and centralize fundraising efforts.