A large ring in the shape of a black flower encircled one of her fingers. She was dressed in a narrow-waisted black skirt and a black-and-white striped blouse.
Peeper founded the association 25 years ago, and remains its president. “They should just take me home and enjoy their time with me, because I would probably not live to be a teenager.” We were in Oviedo, Florida, in an office with a long, narrow sign that read The International Fibrodysplasia Ossificans Progressiva Association. “Basically, my parents were told there was nothing that could be done,” Peeper told me in October. All they did say was that Peeper would not live long. The Mayo doctors didn’t tell Peeper’s parents that. Bone by bone, the disease would lock her into stillness.
Within a few years, she would begin to grow new bones that would stretch across her body, some fusing to her original skeleton. Peeper’s diagnosis meant that, over her lifetime, she would essentially develop a second skeleton. The name meant nothing to Peeper’s parents-unsurprising, given that it is one of the rarest diseases in the world. Peeper was 4 when the Mayo Clinic confirmed a diagnosis: she had a disorder known as fibrodysplasia ossificans progressiva (FOP). 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. After a few days, the swelling vanished as quickly as it had arrived. 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. Two months later, a bulbous swelling appeared on the back of Peeper’s head. Doctors fitted her with toe braces and sent her home. When Jeannie Peeper was born in 1958, there was only one thing amiss: her big toes were short and crooked.
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