What is fibrodysplasia ossificans progressiva (FOP)

Fibrodysplasia ossificans progressiva (FOP) is a rare, severely disabling, autosomal dominant disease characterized by recurrent painful episodes of soft tissue swelling and the development of tumors in subcutis and muscle tissue. These lesions lead to heterotopic ossification, that is, true bone tissue formation in the axial musculature, the ligaments, the fascia, the aponeurosis, the tendons, and the joint capsules. A variety of congenital skeletal malformations of the hands and the feet, especially a hallus valgus deformity with microdactyly, also are characteristic.

Brave Millie Barker loves dancing and playing with friends, but with every step the three-year-old takes her mum looks on in fear. The happy youngster, who has one of the world’s rarest genetic conditions, is so far unaware of the seriousness of her illness – which is slowly turning her into a human statue.

Bone is forming in her muscles. Eventually Millie will grow a second skeleton that will restrict her movement completely.

Every fall, bump or bruise can make more bone grow.

Worried mum Lorraine Turner said: “I watch her with my heart in my mouth.

“I want her to have as normal a childhood as possible but at the same time I want to wrap her up in cotton wool.

“If I had a pound for every time I’ve told her to slow down or take care, I would be a millionaire.”

Millie cannot ride a bike or use a trampoline. However, at the moment, she is oblivious to her situation.

Lorraine, 34, said: “She’s a giggling, bright girl. My fear is having to explain her condition to her as she gets older.”

Millie is one of just 40 people in the UK and 700 across the globe with fibrodysplasia ossificans progressiva, or stone man syndrome.

Sufferers aren’t expected to live past 40 and there is no cure, although experts are working to discover one.

Lorraine, of Framlingham, Suffolk, said: “I have moments of terrible sadness but I also know my daughter is a tough kid.

“All I can focus on is raising awareness and money to find a cure.”

As a baby, doctors noticed Millie’s big toes were turned inwards but as her condition is so rare, no diagnosis was made.

It was only last year, when she was taken to hospital with lumps on her neck, that a medic who had seen FOP before spotted the problem.

Culled from mirror.co.uk