The Girl With Two Skeletons

Rachel Parks is like a little stone girl.

She suffers from one of the rarest and most horrific diseases in the world - she's got TWO skeletons!

Seven-year-old Rachel is living with a genetic disorder which causes her body to grow a second skeleton.

She is believed to be one of only around 175 people in the world affected by the distressing condition called Fibrodysplasia Ossificans Progressiva - FOP.

There is currently no treatment or cure for the disorder which causes bone to form in her muscles,tendons and ligaments.

The disease causes the body to produce not just too much bone,but an extra skeleton that eventually immobilises the joints of the body.

Her mum Margaret,34,said "All they had was half a page of information in a medical book to go on.It is very frustrating because there is not a lot we can do to help her.

"They say that the extra bone can form either without any warning or as a result of trauma,such as a bump or fall.We just have to be extra careful that she does not take any knocks."

Margaret and Rachel's dad,Chris,are hoping to take their daughter to America this year where a team of experts are desperately battling to find a cure.

They are hoping to raise cash to take Rachel over to Philadelphia in November where a major conference is being held with medical professionals from all over the world and families affected by FOP.

Margaret said "The researchers believe they are around five years off finding a treatment which could stop the progression of the disease.That is giving me a glimmer of hope and I want to do everything I can to help them achieve that."

They do not have a set target in mind,they just want to raise awareness of FOP and raise as much money as possible for research into it.

Margaret said "When Rachel was born,she had funny feet.Her big toes were very short and had what looked like bunions on them.Apparently that is a dead giveaway for FOP,but it is so rare that no-one realised.

"She was fine until she reached the age of four,when a pea-sized lump appeared behind her left ear.It spread round her neck,then her chest and down her back.It was like a swelling,but very hard and hot.

"That happened in the space of a week,at the end of which we took her to the doctor.He said it looked like it could be mumps.

"The swelling on Rachel's neck was getting worse.Everyone was worried she would choke,and they couldn't perform a tracheotomy because the lump was too hard.

"It was then that I mentioned about her feet.A geneticist was consulted and within days we led into a room and told Rachel had FOP,and that there was nothing which could be done about it.

"It was like the end of the world.We were both devastated.It sounds hard,but I couldn't face Rachel.I was too upset,couldn't cope with the news.

"Rachel knows what is wrong with her now,and understands as much as any seven-year-old can.She realises she is different.

"The swellings have been constant since she was four.Trauma or infection can cause them,but they can also just appear overnight.

"We have to watch her 24 hours a day to make sure she doesn't bump herself,but we don't want to wrap her up in cotton wool either so it is very hard.She's got to enjoy as much of life as possible while she can.

"We have two other daughters,Victoria,who is 11,and Laura,aged nine,and they are very good with her - although sometimes they wonder why she is allowed to get away with murder and they can't!

"Rachel's neck is very stiff,and you can see the extra nodules of bone on her back.Her shoulders are locked and her left elbow is locked.

"When a swelling flares up it can either just disappear or turn into a nodule of bone,caused by the muscle,ligament or tendon calcifying.

"Her balance is bad because of her feet,and she cannot run to keep up with her sisters or playmates.She cannot walk long distances,so we take her around in a buggy.But she thinks that is babyish now,so we want a wheelchair for her.

"She can't bathe herself because she cannot move her arms freely.And her jaw is slightly locked,so she can't open her mouth as wide as normal.It just means we have to cut her food up into little bits.

"But Rachel is a real fighter.She won't let it beat her or stop her from doing anything.In one way that is great,but it also very worrying so we have to watch her all the time.

"It can be frustrating for her sometimes if her sisters are running around and she gets left behind,but with help from friends,family and staff at school she acts as normally as possible.

"She can't put her hand up when a teacher asks a question,so they gave her a ruler with a paper hand on the end to wave instead.

"Rachel has two adult helpers at school who watch over her all the time.She can play with the other children,but if it gets boisterous she is moved away.

"It's not just the danger of her falling over,but of people falling into her.Not long ago she fell and broke her nose because she can't put her hands out to break the fall.It flared up and she got two black eyes from it,but luckily her nose went back to normal again.

"The children fully accept her at school.When she first started,some of the older ones made cruel comments so we had to go and sort that out.

"The older people get,the more prejudiced they are,though,and sometimes round town people do stare.Her movements are stiff and robotic so they attract attention,and she walks to one side because her spine is curved.

"She notices the stares and is hurt,but we just tell her they are silly and don't understand.When she was first diagnosed,the doctors told me she would be dead by the age of ten.

"Now we know she could live to be 60.When she reaches her late teens the disease will start to affect her legs and hips.Eventually we will have to decide whether she wants to spend her life sitting or standing."

The disease is not hereditary,but it is genetic.

Margaret is a full-time housewife,and Chris is a computer analyst.