Girl, 17, Battling Rare Disease that Transforms Her Muscle into a Second Skeleton and Will Turn Her into a Living STATUE

Daily Mail
July 29, 2013

Seanie Nammock, 17, has a debilitating genetic condition that causes her to grow a 'second skeleton.'
Seanie Nammock, 17, has a debilitating genetic condition that causes her to grow a ‘second skeleton.’

With her painstakingly-applied make up and fashionable clothes, Seanie Nammock is like any other teenager.

But behind her stylish looks, the teenager is battling a devastating genetic condition that is slowly paralysing her.

The 17-year-old, from West London, is suffering from fibrodysplasia ossificans progressiva (FOP), a disorder that is turning her muscle and tendon into bone.

Already, her arms have become locked into a bent position at her waist, rendering them immobile like a statue.

The teenager has grown extra bone over her shoulders so she can no longer reach above her waist and struggles to brush or wash her own hair or dress without assistance – and the condition could get even worse.

The slightest knock or bump causes painful flare-ups that trigger the irreversible bone growth which locks her joints into place, and she cannot have any injections or biopsies as this too may cause unwanted bone to form.

Perversely, the condition makes it harder for her to avoid accidents as she finds it hard to steady herself on banisters when climbing the stairs and her locked arms affect her balance.

She can’t even out out her hands to break her fall, a situation she describes as ‘scary’.

Bone growth caused by FOPs is different to regular bones.
Bone growth caused by FOPs is different to regular bones.

But the debilitating condition has not hampered her hobbies or social life. A keen cook, she loves to shop and spend time with her friends.

‘My friends are brilliant, they do my hair for me sometimes and help me get my coat on and anything I can’t do really,’ she said.

Seanie uses barbecue tongs to apply make up and a comb with an extended handle to do her hair.

The teenager, who passed 10 GCSEs, including five A grades, told the Sunday People: ‘I just crack on with things to be honest. There is no other option.

‘It’s taken me the last five years to get to the point where I’m able to push it to the back of my mind and just carry on.’

The condition is particularly frustrating for Seanie because before she was diagnosed she was a keen sports fan, playing tag rugby and frequently visiting the gym.

Maria Granaghan, Seanie’s mother said: ‘Her friends are all great. They all look out for each other and just get on with being girls and enjoying themselves.’

Seanie was diagnosed with FOP in 2008 after she was admitted to hospital following a minor trampoline accident.

‘She had fallen on her back and it had caused a sore lump to form,’ said Miss Granaghan.

‘It was huge, hard red and hot to the touch, so I took her to the hospital to get it checked out.’

Unfamiliar with the symptoms, doctors at St Mary’s Hospital told her not to worry, and sent her home – but when the lump didn’t clear and Seanie began complaining of severe pain, her mother rushed her to the Chelsea and Westminster Hospital.

Read More