A HAPPY little girl with a smile for everyone, Annalese Gosling is too young to understand she is slowly becoming a prisoner of her own body.
She loves playing with her siblings and friends, enjoys stories and drawing pictures.
But fused neck and shoulder joints mean that at just four years old she cannot brush her own hair, uses a stick to push off her coat, and a long shoe horn to help put on her shoes.
And cruelly, further immobility is inevitable - for Annalese, from Caldicot, is battling one of the world's rarest, most disabling genetic conditions, a restricting second skeleton developing gradually through uncontrollable bone growth in muscles, tendons and ligaments, and across joints.
Fibrodysplasia ossificans progressiva (FOP), affects just one in two million people. The gene that causes it was identified in 2006, but it remains incurable.
Trauma, such as a bump or fall, can trigger painful swellings that form into bone.
"She's always smiling, never complains, but it restricts her already," said dad Mark Gosling.
"She was born with short thumbs and her big toes bent in, which we now know is an early sign of FOP.
"When she was two-and-a-half, we noticed stiffness in her neck and lower back, and found a lump on her back.
"We thought it was a tumour, but A&E didn't know what it was and she was referred to the children's cancer unit.
"That was horrendous. Scans and tests confirmed it wasn't cancer, but there was something else underlying."
For two years, diagnosis proved elusive, as Annalese underwent more scans and x-rays.
"She has under-developed shoulder sockets, and her neck has been fused since birth. During the school holidays last summer she lost the use of both shoulders.
"The diagnosis of FOP came in February. It's turned her shoulder muscles into a solid mass," said mum Leanne Hill.
"We try to make sure she doesn't fall or bump into things, or get knocked over while playing, because a trauma can trigger the lumps and bone growth.
"We want her to live a normal life, while keeping her well for as long as possible, but FOP is very unpredictable. Every day she is ok feels like a blessing."
Research costs £125,000 a year to support but FOP's rarity, there have been just 700 confirmed cases worldwide and 40 known UK cases, means most fundraising is confined to families and friends.
* Next Saturday, April 12, from 1pm until 4pm, at Dewstow primary school, Green Lane, Caldicot, Annalese's parents will run a Cure-4-FOP fundraiser. Admission is £1.50, including a disco, Mickey and Minnie Mouse, face painting, drinks, cakes, and a balloon release. Proceeds go to Friends Of Oliver, a research-funding FOP charity and support group.
For more information and to donate, visit http://uk.virginmoneygiving.com/FOPFriendsOfAnnalese
Also: www.friendsofoliver.com; www.fopaction.co.uk; www.ifopa.org