Little boy at risk of becoming a ‘mannequin’ 
 
 YOUNG Jarvis runs rings around his mum like any energetic toddler, but even a slight fall can have devastating, and incurable, consequences. 
 
 First profiled in The Sunday Mail last year, Jarvis, 3, is just one of 13 people in Australia to suffer from fibrodysplasia ossificans progressiva – dubbed human mannequin disease. 
 
 PREVIOUSLY: When we first met Jarvis 
 
 Each time Jarvis takes a tumble there is a risk his joints might seize for good and trigger abnormal bone growth. Over time, patients grow a second skeleton and become like human mannequins, trapped in frozen bodies. 
 
 Very little is known about what the future holds for Jarvis, but his mum Lara Boniface, 40, is fighting for all the answers she can get. 
 
 “We don’t know when it’s going to start, when he will have a flare up and 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.” 
 
 Boy has body of 110 year-old 14 year-old Ali Hussain suffers from the rare disease, Progeria, which makes his body age eight times faster than normal. Courtesy IBNLive 
 
 Saturday marks Rare Disease Day, and Ms Boniface and Jackie Kirkman, whose daughter also has a rare disease, are holding a fundraiser in Brisbane at the Pineapple Hotel, Kangaroo Point, for advocacy group Rare Voices Australia. 
 
 They are in the process of establishing a registered FOP Australia group. 
 
 “There’s no research currently being done here we have to go to America for advice,” Ms Boniface said. 
 
 “We want a cure.” 
 
 She has met with genetic researchers from the University of Queensland to see what research can be done, and is monitoring a drug trial in the US. 
 
 All We Ask 2:13 Play video Steve Waugh along with his foundation is trying to raise our awareness of children with rare diseases. Courtesy: Stevewaughfoundation 
 
 “We have the brains in Australia (to find a cure), I know that they’re here somewhere but we’re just nonexistent on the international stage for FOP … but we’re definitely in the process of changing that,” Ms Boniface said 
 
 About 1.2 million Australians suffer from a rare disease, but Ms Boniface said many felt isolated by their peculiar diagnosis and struggled to navigate the health system. 
 
 She is also pushing for a national register of rare diseases numbers. 
 
 “I believe that if rare disease as a group can come together it will hope our individual causes be furthered as well,” she said. 
 
 Visit rarediseaseday.org. 

 A rare disease has left a young Australian boy at risk of being trapped in his own body, news.com.au reported. 
 
 Jarvis, 3, suffers from fibrodysplasia ossificans progressive, which has been dubbed “human mannequin disease.” The disorder causes muscle tissue and connective tissue to gradually be replaced by bone, forming bone outside the skeleton and restricting movement. 
 
 Whenever Jarvis falls, he runs the risk of his joints seizing uncontrollably and triggering abnormal bone growth. 
 
 Jarvis is one of 13 people in Australia diagnosed with the condition. According to the National Institutes of Health (NIH), the rare disorder is believed to occur in only about one in two million people worldwide. 
 
 The boy’s mother, Lara Boniface, 40, is fighting for any answers she can get. 
 
 “We don’t know when it’s going to start, when he will have a flare up and 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,” she told news.com.au. 
 
 Click for more from news.com.au.
– 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.)