A teenager who is slowly become a living statue as her muscles turn to bone, effectively meaning she has a second skeleton growing inside her, is fighting to raise cash to find a cure.
Seanie Nammock, an 18-year-old from North Kensington in West London, is "turning to stone" because of the rare Fibrodysplasia ossificans progressiva (FOP) disease, also known as stone man syndrome.
The condition, which only affects 45 people in Britain, turns muscles, ligaments and tendons into solid bone, effectively imprisoning the sufferer's body. Seanie's back and neck are already frozen and she cannot lift her hands above her waist.
Her mother Marian told the Birmingham Mail: "We dread the thought of her second skeleton spreading to the lower part of her body.
"She will have a life-changing decision to make about whether she wants to stay in a sitting down or lying down position. Because that’s how she will be for the rest of her life."
Even the most of mundane activities is affected by the disease; when she goes to the dentist she can’t have painkilling injections because the trauma of having a needle pushed into her gums could spark an agonising growth spurt in her jaw.
“People can’t get their heads round what I have,” she explains. “The dentist admitted that he had to go on Google to look up FOP to find out what it was. So I have to make sure I really look after my teeth."
A skeleton with FOP
There is no known cure for FOP, and only 600 people in the world have been diagnosed with it. The only treatment available to Seanie is taking over-the-counter painkillers. The life expectancy for somelike like Seanie is 30 to 40 years.
According to researchers at the University of Pennsylvania School of Medicine FOP occurs when a certain gene, dubbed the "skeleton key," is damaged:
"Children with FOP seem normal at birth, except for telltale malformations of the great toes that look like congenital bunions. Early in childhood, painful swellings that are often mistaken for tumors seize the skeletal muscles and transform them into bone. Eventually, ribbons, sheets, and plates of bone cross the joints, lock them in place, and render movement impossible. Attempts to remove the extra bone leads to explosive growth of new bone. Even the slightest trauma such as bumps, bruises, childhood immunizations, and injections for dental work can cause the muscles to turn to bone."
"We get nothing from the Government, which really annoys me," Seanie adds. "Especially when I hear about girls getting boob jobs on the NHS or politicians’ spending sprees."
Seanie and her family have already raised £60,000; click here to add to their appeal.