Woonona girl Sophia Jans is happily learning to crawl, but she won't be able to take her first steps until she undergoes pioneering surgery in the US.
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Her parents Chris and Carley said Sophia, 10-months, will have to have her right leg amputated unless she has the surgery with renowned limb specialist Dr Dror Paley - but it comes with a $250,000 price tag.
They are hoping to raise that amount through community and online fundraising - including a benefit night in Wollongong on June 13 - but are prepared to sell their family home to fund it.
"Sophia has a rare limb deficiency called fibular hemimelia but despite a lot of research we have not been able to find a surgeon in Australia who can offer the same options that Dr Paley offers," Mrs Jans said.
"Limb lengthening procedures have been available here since the 1980s but Sophia also needs surgery to correct the deformities to her foot and ankle.
"The best time for her to have the surgery is between 18 months and two years so we are really trying to fundraise to get her to the US for surgery next April."
Ms Jans said she'd been overwhelmed by community support, although she had been upset at some negative comments since her daughter's story first appeared in the Mercury.
"We're not discriminating against amputees - if amputation was her only option then we would embrace that," she said.
"We've also been accused of wanting a perfect child - well, she is perfect just the way she is. However to do nothing is not an option and so we are just pursuing the options that will allow her to keep her own leg.
"We just wish for her to have a good life, an active life, and one that is as free of pain and challenges as possible."
Fibular hemimelia is a rare disease occurring in one in 40,000 births, according to Dr Paley's website. The condition causes partial or total absence of the fibula, a shortening of the tibia, and foot deformity.
"We treat the foot deformity with the 'superankle' procedure and combine this with lengthening surgery," stated Dr Paley.
A benefit night is being held for Sophia at the Novotel Northbeach on June 13, while a fundraising page has been set up here.
