http://www.thesun.co.uk/sol/ho....ece?OTC-RSS&ATTR=News
A TEENAGER is fighting a devastating rare disease that is slowly turning her into a human statue.
The slightest knock, even a pinprick, causes Seanie Nammock?s tissue to turn hard so she almost has a second skeleton.
Her arms have frozen in a bent position while her back and neck have already started turning to stone. Her other body parts will gradually freeze.
Seanie, 13, suffers from FOP, or fibrodysplasia ossificans progressiva, which affects only 600 people in the world.
Brave Seanie cannot wash her hair or reach for things in her home in Ladbroke Grove, West London, and relies on her friends for help. She said: ?Not everyone knows that I shouldn?t get bumped so my friends help shield me in crowds.
?I leave school classes five minutes early to avoid the rush, and then me and my mates usually go and sit somewhere out of the way. I just try and do what I did before.?
FOP expert Dr Frederick Kaplan said: ?Patients with FOP literally form an extra skeleton and that skeleton imprisons their body, making it virtually impossible for them to move.?
Seanie?s condition was diagnosed last year after a trampolining accident.
Nightmare
Her mum Marian Granaghan, an administrator, said: ?Last year she fell on her back and it caused a sore lump to form.
?It was huge, hard, red and hot to the touch so I took her to the hospital to get it checked out.
?The drip she was on before she was diagnosed is probably what caused her left arm to lock.
?That?s why it?s so important to get diagnosed early.
?To be told your daughter has one of the worst medical problems on the planet and that there is no cure is every mother?s nightmare.?
Seanie?s only hope is a research project at Oxford University, which is searching for a cure.
The world?s most famous FOP sufferer was American Harry Eastlack, who developed it aged ten.
By the time of his death aged 39 in 1973, he was a human statue, apart from his lips.
A TEENAGER is fighting a devastating rare disease that is slowly turning her into a human statue.
The slightest knock, even a pinprick, causes Seanie Nammock?s tissue to turn hard so she almost has a second skeleton.
Her arms have frozen in a bent position while her back and neck have already started turning to stone. Her other body parts will gradually freeze.
Seanie, 13, suffers from FOP, or fibrodysplasia ossificans progressiva, which affects only 600 people in the world.
Brave Seanie cannot wash her hair or reach for things in her home in Ladbroke Grove, West London, and relies on her friends for help. She said: ?Not everyone knows that I shouldn?t get bumped so my friends help shield me in crowds.
?I leave school classes five minutes early to avoid the rush, and then me and my mates usually go and sit somewhere out of the way. I just try and do what I did before.?
FOP expert Dr Frederick Kaplan said: ?Patients with FOP literally form an extra skeleton and that skeleton imprisons their body, making it virtually impossible for them to move.?
Seanie?s condition was diagnosed last year after a trampolining accident.
Nightmare
Her mum Marian Granaghan, an administrator, said: ?Last year she fell on her back and it caused a sore lump to form.
?It was huge, hard, red and hot to the touch so I took her to the hospital to get it checked out.
?The drip she was on before she was diagnosed is probably what caused her left arm to lock.
?That?s why it?s so important to get diagnosed early.
?To be told your daughter has one of the worst medical problems on the planet and that there is no cure is every mother?s nightmare.?
Seanie?s only hope is a research project at Oxford University, which is searching for a cure.
The world?s most famous FOP sufferer was American Harry Eastlack, who developed it aged ten.
By the time of his death aged 39 in 1973, he was a human statue, apart from his lips.
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