SHE may be three in July but Eva Pym has only just learnt to communicate with Mum and Dad — she can sign "more", "finished" and "bed".
Eva has also invented her own way of getting around.
"She can bum shuffle at great speed and is loving doing lots of painting and drawing," her mother Katherine Pym, of Kellyville, said.
Eva has a chromosome condition known as 6q23-25 deletion. She is believed to be the only person in the world with this particular deletion.
"The chromosome deletion means she has her own timeline for milestones," Mrs Pym said of Eva who sees 14 specialists for heart, sleeping and developmental problems.
For a year, Eva's parents Katherine and Daniel lived on a hope and a prayer that their precious daughter would be approved for growth hormone treatment.
But the government recently said no.
They must now fork out $10,000 a year to fund the treatment that could give their little girl the muscle tone she needs to stand up and walk into their arms for the first time.
If this financial burden wasn't enough, the couple is expecting their second child in early April.
Click on the arrow below to watch a video interview with little Eva's mum, Katherine, shot by Fairfax Media videographer Carlos Furtado.
"Obviously we want Eva to have quality of life," Mrs Pym, a former Cherrybrook Public School pupil, said.
"But now we don't know what the future holds; I think that's the hardest thing."
After Eva was born Mrs Pym gave up her job to care for her daughter full-time.
The couple receives $114 a fortnight but spend $120 a month on medicines.
They also pay for two of Eva's specialists from their own pockets.
To help ease their load Mr Pym's former teammates at Beecroft Rugby Club have organised a charity fund-raiser, Saturday Night Eva, in April.
"The aim is to fund the growth hormone treatment and early intervention for Eva," Mrs Pym said.
She said the family may also need to re-locate to Melbourne to be closer to The Royal Children's Hospital if it's decided Eva needs a heart transplant.
Follow Eva’s progress at facebook.com/AllAboutEvaPym
Saturday Night Eva is on Saturday, April 20, 7pm, at the Crowne Plaza, Norwest.
Tickets: $150 each. Bookings: trybooking.com/30747