Meet the 17-year-old with stone man syndrome; growing a SECOND skeleton and could turn into a living statue

Fashion-mad Seanie Nammock is spending the summer hanging out with friends and shopping for clothes on a well-earned break from her A-levels. She never goes out without putting on her full make-up and dressing up to look her best. So to most observers she appears like any other attractive sixth-form girl. But Seanie, 17, is suffering from a crippling genetic condition so rare that it affects only 45 people in the UK. Cruelly - it is slowly turning her into a living statue.

For five years she has been battling fibrodysplasia ossificans progressiva, known as FOP or stone man syndrome. It turns muscles, ligaments and tendons into solid bone. This forms a second skeleton on top of the original one, and each section of her body affected becomes solid like a statue.
Seanie's back and neck are frozen already, leaving her unable to lift her hands above her waist. She lives in fear of the awful condition getting worse.



Her mum Marian explains: "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 lyingdown position - because that's how she will be for the rest of her life."

Any kind of bump or blow to Seanie's body can trigger a painful growing spurt that adds to the second skeleton.

She says: "It doesn't help that I'm accident-prone.
I'm always falling up or down stairs because I can't hold the bannister.

"My balance is also a problem because of the way my arms are locked.

"I can't put them down either, to break my fall. So it can be really scary."

In the meantime she won't let the disease stop her living life to the full.