AVA NEEDS YOUR HELP
By ANN-MARIE MAY
AT first glance six-month-old Ava Neville appears to be the perfect baby.
She barely cries and has a smile that you can't resist.
But things are not as they seem, with little Ava fighting an uphill battle after being diagnosed with tuberous sclerosis.
Tuberous sclerosis (TS) is a condition where calcified tubers can grow in all organs of the body creating various physical and mental difficulties.
In Ava's case, several tubers in her brain are causing her to have up to eight seizures every day, every one of which can slow her mental development.
Many children with this condition end up with various degrees of autism, however this has been shown to lessen when seizures are controlled at an early age.
At night Ava wakes every two hours, making her and parents Peter and Joelle both physically and emotionally exhausted.
Before being medicated, Ava would fight off sleep, knowing that this is when the seizures would occur. She used to scream, but now just 'has a bit of a grizzle', sedated by the drugs.
"Ava is already showing a two-month delay in her development and unfortunately the drug of choice, vigabatrin, has had little to no effect on her seizures or brain activity," Mr Neville said.
Mr and Mrs Neville have been advised that no neurosurgeon in Australia has experience with surgery on Ava's condition but Mrs Neville has found a centre in America, the New n To Page 5
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York Comprehensive Epilepsy Centre, that can help.
Many children have been made 'seizure-free' from the surgery, while many others have had a vast reduction in their seizures.
After looking into Ava's case, the centre consider her a good candidate for surgery and have booked her in for a week of tests mid-September.
But is comes at a cost ? $130,000 to be exact.
"If it's successful it will be worth every cent, but we can't do it alone," Mrs Neville said.
Qantas has donated the flights and $20,000 has already been raised by family and friends, but the clock is ticking, with the Neville's expected to fly to New York on Septem- ber 16.
People wishing to help get the Neville's on that plane are asked to send donations or cheques, made payable to 'Rotary Club of Coffs City ? Ava for America' to PO Box 6302, Coffs Harbour 2450.
Mrs Neville would also like to offer some advice to other parents.
"Trust your instincts. It may be a cliche, but parents do know best. If I hadn't been a pushy broad, we might still not know what was wrong with Ava."