Seanie Nammock, 17 from UK has an extremely rare genetic disorder. As unrelenting as it can get the condition is slowly turning her into a living stone statute. Seanie suffers from a genetic condition known as fibrodysplasia ossificans progressiva or FOP. It’s more popular as the Stone Man Syndrome.
The condition slowly cripples her entire body by turning all of her muscles and ligaments responsible for movement into hard bone. It essentially develops another skeleton that is on top of the original one thus turning her into a living statue.
Although Seanie is living in fear that her condition might get much worse, she is embracing life to the fullest as any 17-year-old would do. She’s a fashion enthusiast and always dresses up perfectly for the occasion. Although she has FOP this fact could not prevent her from acing her exams and becoming a perfect student eager to go to prom.
Seanie’s sister Sinead is currently organizing a mountain trek to the top of Mount Kilimanjaro in Tanzania. The family has already raised $52,000 from a $200,000 target. The money is meant to finance the research for a potential cure for Seanie’s condition.