With her long brown legs and mane of golden hair, Darcy Coppin looks the very picture of a happy, healthy child.
But what's hidden behind her long blonde locks is a deadly condition that affects one in every 500 babies, yet fails to attract even the most meagre government funding to help find a cure.
Darcy was born with hydrocephalus - a life-threatening medical condition that, if left untreated, is fatal.
Hydrocephalus occurs when there is an excessive accumulation of cerebro-spinal fluid (CSF) in the brain. It can be congenital or acquired later in life.
It is the most common clinical problem paediatric neurosurgeons face and one of the most common congenital problems in children - twice that of Down syndrome.
The usual treatment is the insertion of a shunt, which drains the fluid from the brain.
The shunt was originally developed by engineer John Holter in the 1960s in a bid to save his son from what then was a death sentence.
It has not changed dramatically since its first use.
The shunt has saved many lives, but still has the highest failure rate of any medical implant.
Recipients constantly face the prospect of a malfunction or infection and the only treatment is delicate neurosurgery to fit a replacement.
For children such as Darcy and their families, it means living with a ticking timebomb, never knowing if or when the shunt will fail.
Darcy's mum and dad, Jane and Brad Coppin, moved closer to Moruya Hospital on the South Coast in case the worst happens and are counting their blessings that their 10-year-old is currently so well.
"We've just celebrated her first shunt-a-versary since her third shunt was put in," Jane said.
"The last shunt lasted seven years. We've had a really good run - five years is a good run.
"Darcy is living a completely normal life; she's a great case. However, we know we need to be ready because things can change overnight."
The Coppins are using this small window of respite to put their efforts into raising awareness about hydrocephalus and lobbying for the small amount of annual funding needed to develop better treatment and possibly a cure.
"We have to do something. Early diagnosis leads to better outcomes, but too few people know about hydrocephalus.
"If you think your baby's head is growing too quickly, get it checked out. It's vital that it is diagnosed before the fontanelle closes."
The second part of the Coppins' mission is to see more research done into shunts and their development.
"The long-term prospects of people living with hydrocephalus are dependent upon the function of their shunt," Jane said.
"Yet at the moment what shunt is used is very much a subjective decision by the surgeon. There is no registry to collate statistical data on what's the best way forward."
One of Australia's top neurosurgeons, Professor Brian Owler, has worked on the registry proposal for 10 years and has had vocal support from the Coppins.
They say a national registry could compile information on treatment to sort out better methods to preserve quality of life and even save a life.
It would help prevent much of the dangerous maintenance surgery performed at huge expense to taxpayers and risk to patients.
Prof Owler has won a $150,000 Federal Government commitment to establish the Shunt Registry but not the $200,000 recurrent funding needed to actually make it function.
Over three years, it cost The Children's Hospital at Westmead in Sydney, conservatively, $1 million a year to implant shunts and another $2.7 million to maintain existing implants, most of that due to infections and blockage - making the $200,000 needed seem like a pittance.
Jane says that seems to be part of the problem.
"The irony is that when Brian [Owler] met Catherine King [then Parliamentary Secretary for Health and Ageing] earlier this year, she couldn't believe it was such a small amount.
"If we can improve the type of shunts that we are using, we can reduce the infection rate and save hundreds of thousands of dollars each year," Jane said.
"Fifty per cent of shunts fail in the first two years after insertion, 70 per cent of all shunt operations are replacements, two-thirds of patients are affected intellectually, shunt replacement can cause stroke, sufferers may develop epilepsy - seizures can occur as a result of hydrocephalus - and physical limitations and gross motor/co-ordination problems can occur," Jane says
It's not good enough, particularly when young lives as precious as Darcy's are at stake.