A little Bulli girl who was facing amputation of her right leg has taken her first steps thanks to the generosity of the Illawarra community.
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A campaign to Save Sophia’s Leg has raised more than $170,000 since December 2014, and has allowed the 17-month-old to undergo surgery in the US.
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.
Her parents Carley and Chris had been told that amputation was the only option in Australia, but then they found US limb specialist Dr Dror Paley.
Dr Paley combines limb-lengthening operations with his ‘’superankle’’ procedure to address the deformity in the foot.
Sophia underwent a six-hour operation at his Florida hospital on January 20.
It included realigning her foot and ankle as well as starting the limb lengthening process by securing an external fixator to her leg. The struts on the fixator will be wound up by 1mm a day – to a limit of 5cm.
‘’She’s progressing so well – within a week she was up and standing; within two weeks she was walking with assistance and now three weeks later she is crawling around the floor,’’ Mrs Jans told the Mercury.
‘’Now her ankle has been corrected the ball of her foot rests on the ground, and the lengthening procedure will give her an extra 5cm which is a lot for a little person.
‘’Dr Paley is a miracle worker. If amputation had been our only option we would have accepted that, but this option will mean she will be able to walk on her own two feet.
‘’To see how successful the operation has been is so rewarding as it is validation that we are doing the right thing.’’
For most parents, watching their child take their first steps is wonderful – for the Bulli couple it was priceless.
‘’We had tears in our eyes – just to watch her after all she’s been through,’’ Mrs Jans said. ‘’She’s such a little fighter, she amazes us every day and we are so proud of her.’’
Mr Jans will fly home later this month to be with the couple’s three other children while Mrs Jans stays on until April when the external fixator will be removed.
Sophia will then be in a plaster cast for up to eight weeks to allow her lenthened bones to harden and strengthen. She will have to return to the US for further lengthening surgery when she’s seven, and again at 16.
An online fundraiser still continues with the couple getting no assistance from the Australian Government. They hope their story will make the government change its stance on funding this type of surgery.