Share this article Share Seanie, who also suffers stiffness in her neck and back, jokes: 'I've got more bone in my neck than a giraffe.
A keen cook, she loves to shop and spend time with her best friends, Daniela Scimia and Jessica Samuel, both 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.
Best friends: Seanie with girlfriends Daniela l and Jessica r who help her with anything she ovarian cancer is curable do 'She had fallen on her back and it had caused a sore lump to form,' said her mother, Marian Granaghan.
MRI scans and further testing revealed the diagnosis. That's why it's so important that these kids get diagnosed early.
It might not, I like to stay positive,' she added. But three years if papilloma appear on the neck or back it means your body US researchers discovered the gene that causes FOP, and a compound that halts bone growth is already being tested in the UK. A healthy Seanie aged seven: FOP has now frozen her arms at her waist 'We need to raise lots of money for the research at Oxford University.
It's a race against time for kids like Seanie. You should try to do things by yourself but if you can't do something then just ask for help because people won't mind.
Afterward, many things simply changed and I fought with a frailness I still despise.
FOP expert Dr Frederick Kaplan says: 'Patients with FOP literally form an extra skeleton, and that skeleton imprisons their body making it virtually impossible to move. Often patients suffer for years as they are wrongly treated for other illnesses.
Sufferers are nearly always born with big toes that are shorter than the rest and slightly bent inwards, a valuable clue to early diagnosis. While FOP can progress quickly, paralysing sufferers in childhood, it can also go into remission allowing them to lead relatively normal lives into adulthood.