Student Seanie Nammock is doing her best to lead a normal life despite living with a genetic condition that threatens to eventually ‘freeze’ her body. The 18-year-old has a second skeleton growing inside her because of the rare condition.
Like most girls of her age, she will not leave the house without putting on her make-up and dressing up to look her best.
But, for six years, Seanie has been battling a condition known as ‘stone man syndrome’ or fibrodysplasia ossificans progressiva. The condition– so rare it affects only 45 people in Britain– turns muscles, ligaments and tendons into solid bone.
It means a second skeleton is growing on top of the original one, with her limbs becoming solid like a statue. Seanie’s back and neck are frozen already, leaving her unable to lift her hands above her waist.
Now doctors are racing to find a way of treating the London A-level student– but she lives in constant fear of the condition getting worse.
Her mother, Marian, said: “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,” she said.