Exceptional:
Alana Edwards 5, cannot ride a bike or play contact sports, because any knock or blow can turn her muscles into bone, leaving her joint locked in this position forever
Alana has a rare disease that turns her muscles and joints into bones (
Image: Stephanie Edwards)
A little girl “locks herself” in her own body like a “human statue” after being diagnosed with an ultra-rare disease that turns her muscles into bones.
5-year-old Alana Edwards was diagnosed with a rare disease when she was two years old after mysterious growths appeared all over her body.
The condition that causes the muscles to ossify (turn to bone) can be caused by a knock or a blow, which means that Alana cannot ride a normal bike or play contact sports.
Fibrodysplasia Ossificans Progressiva (FOP) is so rare that there are only approximately 1,000 known cases worldwide and there is currently no cure.
Somerset’s mum Stephanie told The Mirror: “I never heard of it until I read about it.
Alana developed growths on her back (
Image:
Stephanie Edwards) Alana and mother Stephanie
Image:
Stephanie Edwards)
“When I read that it was like being imprisoned in your body in a prison of bones or turning into a human statue, I was devastated.
“It was absolutely heartbreaking.
“They tell you not to go and search for it on Google, but of course, this is the first thing you will do.
“She can’t turn her head completely like we do, she can’t raise her arms above her head, her arms are fixed to the side and her left elbow has recently fused.
“My biggest fear right now is that she will lose movement in her right arm as well.
“As I get older, I know that her condition will improve and she is likely to remain in a wheelchair permanently.
Alana needed a walker to help her walk until she was 3 (
Image:
Stephanie Edwards)
FOP is often characterized by irregularly shaped toes at birth and mysterious growths or swellings that appear all over the body.
At just two weeks old, Alana had both symptoms, but Stephanie said it took her years to get the diagnosis and said 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.
“At first, the doctors didn’t seem worried about it. They said they would watch him when she started walking.
“But then we noticed that she had developed swelling in her back and neck.
“He was described as a birth trauma or birthmark, but then these swellings began to appear.
Now she has a specialized skein to help her move (
Image:
Stephanie Edwards)
“No one knew what was wrong with her, she was a mystery to the doctors.
“Then a doctor came in and asked me if I had dropped or shaken my baby.
“This led to Alana taking X-rays and a full body scan to rule out abuse.
“It wasn’t until he was two years old that the doctor suggested that he might have FOP and that we should do a genetic test.
“When her tests came back, it was confirmed.”
Today, Alana has a specialized tricycle and buggy that she can use when she feels tired as a result of her condition.
Alana with her older brother Cody, 6 (
Image:
Stephanie Edwards) Alana had deformed toes at birth
With her son Cody, 6, the mother of two, Stephanie, is fully focused on creating happy memories of Alan and lives in the hope that researchers will find a cure.
She said: “No surgery can help her, it will only make the damage worse.
“There is no cure, but we try not to worry about the future.
“We are trying to focus on the here and now and create as many happy memories for Alana as possible, because there will come a time when she will not be able to do some of the things she can do now.
“I don’t want her to ever look back and say I wish I had done it or felt like she missed it.
Alana boldly shares her story to raise awareness of her illness (
Image:
Stephanie Edwards)
The family is supported by and has raised funds for Friends of FOP, a charity that helps those affected by the condition.
Stephanie said: “We live in the hope that they will find a cure in time to help Alan. The more people know about FOP, the better so we can raise awareness and the means to combat it. ”
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