An unfortunate young UK student is living with an extremely rare condition, which will eventually turn her body into stone.
18 year old UK student Seanie Nammock and her family have spent the last 6 years fearing for Seanie’s life. The teenager has a condition called Fibrodysplasia Ossificans Progressiva or Stone Man Syndrome, which slowly turns each of her ligaments, tendons and muscles into solid bone. Basically, this means that the girl has a second skeleton growing inside her body.
Seanie will become a stone-hard statue at some point and the process is sped up with every bump or blow to her body. The girl’s organism is partially paralyzed already – her neck and back are already affected by the syndrome, as well as her arms. Seanie can’t even hold onto to a railing whenever she’s walked up or down a staircase, because she can’t lift her arms higher than her waist.
The worst part is that for Seanie the only way to get through the day is with lots of painkillers, because there’s no known cure for the rare disease. Doctors at Birmingham’s Queen Elizabeth Hospital want to make a change and find a cure (or at least a way to slow down her condition) with the setting up of Rare Disease Centre.
Her sister, Sinead, is doing her best to raise a charity and to fund further research of her condition. Last year she raised more than $45,000. Some of her supporters even called the government to ask for funding, but unfortunately with no luck.
The condition is so rare that affects only 600 people worldwide – turn muscles into a solid bone. Basically a second skeleton slowly grows inside her and she will become like a “living statue”.