Teenager Has SECOND Skeleton Growing Inside Her Due To Rare Condition

A teenager has a SECOND skeleton growing inside her because of a rare condition.
A-level student Seanie Nammock is bravely battling the rare illness which could eventually turn her into a living statue.
For six years she has been battling a condition known as ‘stone man syndrome’ or fibrodysplasia ossificans progressiva (FOP).
The condition – so rare it affects just 600 people worldwide – turns muscles, ligaments and tendons into solid bone. It means a second skeleton is slowly growing on top of the original one, with her limbs gradually becoming solid like a statue.

Seanie’s back and neck are frozen already, leaving her unable to lift her hands above her waist.
NHS doctors are racing to find a way of treating the Birmingham schoolgirl’s condition – but she lives in fear of the awful condition getting worse.
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 lying down 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.
“It doesn’t help that I’m accident-prone,” the teenager says. “I’m always falling up or downstairs 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 to break my fall either – so it can be really scary.”
In the meantime, however, she won’t let the disease stop her living life to the full. For her school-leaving prom Seanie’s perfectly applied make-up had to be put on with long-handled barbecue tongs because she cannot get her hands close enough to her face.
And she looks after her own hair using brushes with extra-extended handles.
In fact, Seanie always looks so pretty and poised that even some of her friends don’t even know she has such a serious condition.
And it didn’t stop her passing 10 GCSEs, including five A grades, and doing her AS Levels last year.
The only treatment available to Seanie is taking over-the-counter painkillers.
But doctors at Birmingham’s Queen Elizabeth Hospital want to change that with the setting up of a world-class Rare Disease Centre where conditions such as Seanie’s can be researched and treated.
Setting up a ‘one stop’ centre for those suffering rare genetic disorders will enable patients to access the very best treatment and have all their appointments on one day.
They eventually hope not just to slow the symptoms of Seanie’s insidious illness but to find a cure.
Last year Seanie’s sister, Sinead, embarked on a charity trek to Mount Kilimanjaro in Tanzania, raising £34,000 to fund further research.
Campaigners are calling on the government aid and are also asking for members of the public to chip in to support the proposed new centre.