A Bulli couple will make a last-ditch effort to obtain Australian Government assistance to help their little girl undergo surgery in the US to save her leg.
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Fourteen-month-old Sophia Jans was born with a rare limb deficiency called fibular hemimelia, which means she has no fibula in her right leg, a shortened tibia and just three toes.
Carley and Chris Jans were told by specialists that amputation was the only option in Australia, but a desperate search for information on the condition led them to US limb specialist Dr Dror Paley.
Funds still needed for overseas surgery
Dr Paley combines limb-lengthening operations – which are available in Australia – with his ‘’superankle’’ procedure to address the deformity in the foot.
The surgery is booked in for early January, however it comes with a hefty $250,000 price tag. So far family, friends and strangers have helped raise $160,000 through fundraisers, but there’s a $90,000 shortfall.
The couple is prepared to sell their home – even as they rebuild it after it was gutted by fire two years ago. They will also meet with Federal Health Minister Sussan Ley later this year in a bid to obtain some funding.
Sophia, who was also born with talipes (club foot) to her left foot, was a ‘’miracle baby’’. The couple, who have three older children, were told further pregnancies would be nearly impossible after the loss of twin boys at birth in 2009.
‘’We’re not against amputation – if that was the only option we would accept that,’’ said Mr Jans, a firefighter.
‘’But there is another option so she deserves that opportunity to be like any other child. Every parent would want to give their child that chance.’’
A spokeswoman for the Federal Department of Health said the government may, in some cases, provide financial assistance through its Medical Treatment Overseas program.
However individuals had to meet strict criteria, and assistance was generally only considered for Australians with a ‘’life-threatening medical condition’’.
A spokesman for Health Minister Sussan Ley said the Minister had a planned meeting later in the year to discuss children with severe lower limb deficiencies, which the Jans family would be a part of.
To learn about fundraising events or donate, visit the ‘Save Sophia’s Leg Charity Appeal’ Facebook page.
