Lara Boniface, whose son Jarvis, 3, has a rare disease, is looking to help others in a similar situation. Pic: Liam Kidston Source: News Limited
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.
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.”
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
Steve Waugh along with his foundation is trying to raise our awareness of children with rare diseases. Courtesy: Stevewaughfoundation
- news.com.au
- 27 Feb 2014
- News
“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 raredisease.org.
Originally published as Little boy at risk of becoming a ‘mannequin’