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Girl has disease that turns body into bone

2.7
2.7 from 10 votes
Monday, April 11, 2011

The parents of Miranda Friz, Peter and Karen, didn't notice anything was different about their darling baby girl until she took a tumble at a local water park at the age of two.

She developed a huge swelling on her face that doctors couldn't explain.

After many examinations and consultations with specialists, the tot was diagnosed with a rare genetic disorder of the connective tissue where muscle and tissue gradually turn into bone over time.

Fibrodysplasia ossificans progressive, or FOP, fuses joints together, reducing mobility and turning patients into what some have called "living statues."

"I was flabbergasted," Miranda's mother Karen Munro said. "My jaw kind of hit the table."

Children with Miranda's condition are encouraged to avoid activities that would lead to falling because that could lead to more growth. A mutation of the body's repair system causes fibrous tissues like muscle, tendon and ligament to become ossified – turned into bone -- when damaged.

Surgical removal of the extra bone has been known to cause the body to repair the affected area with more bone.

Now six years old, Miranda doesn't know much about her condition, just that she has to be careful not to get hurt.

"If you break a bone your bone grows fast, that's all I know," she said.

There are only 700 known cases of FOP worldwide and there is no current cure.

The disease has already presented itself in several ways in little Miranda's body. FOP bone has caused her shoulder blades and right elbow to be almost completely locked in place and she has very little movement in her back and neck.

Karen has sought out others with the same condition, like Staci, a 34-year-old FOP sufferer in California who is a university student with ambitions to become a fashion designer.

"It is difficult to look at the adults and know that my child could very well end up that restricted," she said.

Despite the limitations of FOP, Miranda is pretty much like any other kid her age, playing with her toys and older brother.

The gene that causes the disorder was identified in 2006 and it's hoped there could be a treatment for FOP on the horizon.

But for now the Friz family is looking to the immediate future and making sure their kids make the most of every moment.

"That's one of the things a lot of the older people with FOP say. When you're a kid and you have FOP make sure you go through each day and do what you want because you can't do that when you're older," Karen said.

The Friz family said they're never going to give up on finding a cure or effective treatment for the disease.

"But if it doesn't happen in Miranda's lifetime I want to know she can have a good lifetime anyway," Karen said.

There is a fundraiser on Saturday night benefiting the Rare Disease Foundation, on behalf of children like Miranda. For more information click here.

© 2011 BellMedia

Source: CTV News
2.7
2.7 from 10 votes
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