Rare Disease Could Turn Boy Into 'Mannequin'

Jarvis Budd is one of 13 Australians to suffer from the rare disease
By Elizabeth Armstrong Moore,  Newser Staff
Posted Feb 26, 2015 8:22 AM CST
Rare Disease Could Turn Boy Into 'Mannequin'
Jarvis, 3, has fibrodysplasia ossificans progressiva, or 'human mannequin disease.'   (HopeforJarvis.com)

Three-year-old Jarvis Budd is one of just 13 people in Australia to suffer from a rare disease called fibrodysplasia ossificans progressiva, or "human mannequin disease." This means that with every minor fall or injury, he runs the risk of his joints seizing and triggering "abnormal bone growth," reports news.com.au. Eventually, bone replaces muscle and connective tissue and forms outside the skeleton, effectively becoming a second skeleton and restricting growth. "The heart's exempt, the eyes are exempt, the brain's exempt,'' Jarvis' mom, Lara Boniface, tells the Courier-Mail. "They're imprisoned in their body but they're mentally alert, mentally smart.''

The disorder is so rare that the National Institutes of Health estimates that only one in 2 million people worldwide have it, adds Fox News. Boniface is talking to genetic researchers at the University of Queensland about how to study it, and she's monitoring a treatment trial in the US and holding a fundraiser for advocacy group Rare Voices Australia. "We don't know when it's going to start," she says. "We still want to raise a normal, strong little boy. I don't want to put him in a bubble and turn him into someone who's scared all the time." (This baby was born with a rare disease that prevents her own mother from touching her.)

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