A little girl is becoming “locked” in her own body like a “human statue” after she was diagnosed with an ultra rare condition that turns her muscles to bone.
Alanna Edwards, 5, was first diagnosed with a rare condition when she was two years old, after mysterious growths appeared all over her body.
The condition which causes muscles to ossify (turn to bone) can be triggered by a knock or a bump, meaning Alanna can’t ride a normal bike, or play contact sports.
Fibrodysplasia Ossificans Progressiva (FOP) is so rare there are approximately just 1,000 known cases across the world, and at present there is no cure.
Mum, Stephanie, from Somerset told The Mirror : “I’d never heard about it until I read up about it.
“When I read that it’s like becoming imprisoned in your body in a prison of bones or becoming a human statue I was devastated.
“It was absolutely heart-breaking.
“They tell you not to go away and Google it but of course that’s the first thing you are going to do.
“She can’t turn her head completely like we can, she can’t lift her arms above her head, her arms are fixed to her sides and her left elbow has recently fused.
“My biggest fear at the moment is that she will lose movement in her right arm as well.
“As she gets older I know her condition is going to progress and it’s likely that she will end up permanently in a wheelchair.”
FOP is often characterised by malformed toes at birth and mysterious growths or swellings appearing all over the body.
At just two weeks old, Alanna had both these symptoms, but Stephanie said it took years to get the diagnosis and claims she even faced questions from doctors about abuse.
She said: “She was about two weeks old when we first noticed that she had funny looking toes.
“The doctors didn’t seem concerned about it at first. They said they would monitor it when she started walking.
“But then we noticed that she had developed swellings on her back and the back of her head.
“They put it down to trauma from birth or a birthmark but then these swellings started to appear.
“No one knew what was wrong with her, she was a mystery to doctors.
“Then one doctor came in and asked me if I had dropped or shaken my baby.
“That led to Alanna having full body x-rays and scans to rule out abuse.
“It wasn’t until she was two that a doctor suggested that she might have FOP and that we should do genetic testing.
“When her tests came back it was confirmed.”
Today Alanna has a specialised trike and buggy which she can use when she feels fatigued as a result of her condition.
With her son Cody, 6, stay at home mum of two, Stephanie, is completely focussed on making happy memories for Alanna and lives in hope that researchers will find a cure.
She said: “No surgical intervention can help her it would only make the damage worse.
“There is no cure but we try not to worry about the future.
“We try to focus on the here and now and make as many happy memories for Alanna because it’s going to get to a point where she won’t be able to do some of the things that she can do now.
“I don’t want her to ever look back and say I wish I’d done that or feel like she missed out.”
Stephanie said: “We live in hope that they will find a cure in time to help Alanna. The more people that know about FOP the better so we can raise awareness and funds to fight it.”