Five-year-old Jasmine Sanderson from Hartlepool has a genetic condition where parts of her body gradually turn to bone.
The disorder is called Fibrodysplasia Ossificans Progressiva and only affects one in every 2,000,000 people. It means the body repairs its muscles, tendons and ligaments with bone instead.
Jasmine wears a protective headband to stop her getting seriously injured. Her parents Kelly and Ian Sanderson told ITV:
– Kelly and Ian Sanderson, Jasmine's parents
"She was born with really short toes her big toes and the doctors just thought it was a birth defect. It took about 9 months for her to get diagnosed and we had never had heard anything like her condition at all. It was a really big shock.
"Slowly but surely her body is building another skeleton, it will eventually lock her body."
The disease is so rare little is known about it. Research at Oxford University suggests in three years a clinical trial could be available. However the family say they need another £120,000 to keep the research teams working on a cure.
For more details go to www.fopaction.co.uk