HomeTop NewsWorldTerrifying Case of a 5-yr-old Girl Whose Muscles Turn into Bone

Terrifying Case of a 5-yr-old Girl Whose Muscles Turn into Bone

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Five-year-old Alanna Edwards can’t ride a bike or participate in contact sports due to the risk of her muscles being turned to bone and her joint being permanently fixed in that position.

After being diagnosed with an incredibly uncommon illness that transforms her muscles to bone, a young girl is being “stuck” in her own body, like a “human statue.”

When Alanna Edwards, 5, was two years old, she was diagnosed with a rare disease when unexplained growths grew all over her body.

A knock or a bump can cause Alanna’s muscles to ossify (turn to bone), preventing her from riding a regular bike or participating in contact sports.

There are only about 1,000 known cases of Fibrodysplasia Ossificans Progressiva (FOP) in the whole world, and there is no cure right now.

“I’d never heard about it until I read up about it,” Stephanie, from Somerset, told The Mirror.

“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.”

Malformed toes at birth are common signs of FOP, as are strange growths or swellings all over the body.

Alanna had each of these symptoms at the age of two weeks, but Stephanie alleges it took years to get a diagnosis and that physicians even questioned her about abuse.

She added: “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.”

Alanna now has a specialized trike and buggy that she can use when she is exhausted from her condition.

Stephanie, a stay-at-home mother of two with her son Cody, 6, is entirely focused on creating joyful experiences for Alanna and hopes that researchers will find a cure.

She added: “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.”

Friends of FOP, an organization that assists those affected by the ailment, has supported and raised donations for the family.

“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,” she said.

Image Credit: Getty

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