The Girl Who Turned to Bone

'When Jeannie Peeper was born in 1958, there was only one thing amiss: her big toes were short and crooked. Doctors fitted her with toe braces and sent her home. Two months later, a bulbous swelling appeared on the back of Peeper’s head. Her parents didn’t know why: she hadn’t hit her head on the side of her crib; she didn’t have an infected scratch. After a few days, the swelling vanished as quickly as it had arrived.

When Peeper’s mother noticed that the baby couldn’t open her mouth as wide as her sisters and brothers, she took her to the first of various doctors, seeking an explanation for her seemingly random assortment of symptoms. Peeper was 4 when the Mayo Clinic confirmed a diagnosis: she had a disorder known as fibrodysplasia ossificans progressiva (FOP).

The name meant nothing to Peeper’s parents—unsurprising, given that it is one of the rarest diseases in the world. One in 2 million people have it.

Peeper’s diagnosis meant that, over her lifetime, she would essentially develop a second skeleton. Within a few years, she would begin to grow new bones that would stretch across her body, some fusing to her original skeleton. Bone by bone, the disease would lock her into stillness. The Mayo doctors didn’t tell Peeper’s parents that. All they did say was that Peeper would not live long.
“Basically, my parents were told there was nothing that could be done,” Peeper told me in October (2013).  “They should just take me home and enjoy their time with me, because I would probably not live to be a teenager.” 

 

We (the author and a grown Jeanie Peeper) were in Oviedo, Florida, in an office with a long, narrow sign that read The International Fibrodysplasia Ossificans Progressiva Association.'

 

this is an excerpt from:

 http://www.theatlantic.com/magazine/archive/2013/06/the-mystery-of-the-second-skeleton/309305/

in which you can read the complete great article on this extremely rare and cruel disease.

 

The reason I am posting this is that one of my daughters good friends through marriage have a son with this condition - a loveable smart and active young boy who already is walking with a hunched shoulder condition and various other restrictions due to the strange growth of bone through out his body.  His only hope for a future normal life is through medical breakthroughs funded in large part by The International Fibrodysplasia Ossificans Progressiva Association. Go to https://en.wikipedia.org/wiki/International_FOP_Association and read farther on this or do your own searches to verify the background of this organization.

Then please donate what you can to help Josh and others that are slowly turning to bone.