EVERY day the Coppin family of Moruya lives fearing of the wost.
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Twelve-year-old Darcy has hydrocephalus, an enlargement of the brain cavities caused by a build-up of cerebrospinal fluid.
Darcy has undergone surgery three times to replace the life-saving shunt which relieves her brain of pressure by allowing fluid to drain.
Fortunately, Darcy still has a reasonable quality of life, which is one reason her mum Jane Coppin can continue the fight for hydrocephalus sufferers Australia-wide.
Others are not so lucky.
Untreated, hydrocephalus can result in brain damage or death.
There are four different types of shunts which can be inserted to treat hydrocephalus, however, too often, they fail.
The US, Great Britain and Scandinavia each fund research and support programs into hydrocephalus, however the commitment of the Australian Government to the cause is wanting, despite one-in-500 babies being born with the condition.
Mrs Coppin can only cite US data, as there is none from Australia, but said it was not uncommon for sufferers to have 50, 60, or even 80 operations due to shunt failures – each with significant risk of brain damage.
Mrs Coppin was part of a campaign which won a $165,000 federal grant to the Neurosurgical Society of Australia to set up a shunt registry.
Its role was to gather evidence of which procedures did or did not work.
The registry framework has been established, but it has no ongoing operational funds.
The society needs an estimated $200,000 annually, and the registry remains dormant.
Society president Mark Dexter told the Bay Post/Moruya Examiner that without ongoing funds, “the long-term sustainability of the registry is challenged”.
Mrs Coppin this year set up the Dollar For Darcy campaign, with the support of Far South Coast Surf Life Saving.
“It’s really frustrating, as a family in a country town, that this is what we’ve got to live with,” Mrs Coppin said.
“It’s not okay.
“Look at my girl: she’s 12, she’s had three brain surgeries.
“The idea that she’s going to have more is hard to take.”
Mrs Coppin said a functioning registry “could make a real difference in her life”.
“It could be the difference between having a mechanism that fails within two years or one that lasts 10 years,” she said.
“For the government to say ‘no, we’ve given $165,000, that’s all we’re willing to do’ - that’s really hard for me to take.”
Mrs Coppin said Westmead Children’s Hospital spent about $2 million a year on hydrocephalus-related operations, including re-insertions.
“Every major hospital performs these operations so, financially, it makes so much sense to be informed,” Mrs Coppin said.
“The shunt has saved Darcy’s life and continues to, however we also need to look into the cause of hydrocephalus and how to prevent and cure it.”