The anguish of epilepsy

Hayley GoddardSound Telegraph

Watching a nine-month-old child's eyes roll back and have a seizure was the start of a two-year mission to find a diagnosis for a Rockingham family's first-born child in 2011.

The diagnosis was that Amelia Lyle, now five, had epilepsy.

In an effort to raise awareness of the condition and funds to help families, Epilepsy Action Australia is holding an online art auction from now until Purple Day on March 26.

Amelia's mother, Rebecca, said watching her endure daily seizures, of varying levels, was "very scary".

"At the time I didn't know anything about epilepsy and feared she would die," she said.

"Everyone who knows about epilepsy thinks about the convulsions, but Amelia's main seizures vary between tonic-clonic (previously known as grand mal) and complex partial seizures."

Mrs Lyle said Amelia had also been diagnosed with global development delay, which meant her speech and social skills were behind other children of her age.

She said her daughter was on two types of medication, twice a day.

"It makes a huge improvement, but there are concerns about the side-effects and whether it affects her learning," she said.

"In December, we tried to change her medication, but she had breakthrough seizures and her learning regressed, so we had to pick her back up from that.

"We can't not medicate her because she has had seizures that lasted for 30 minutes."

Mrs Lyle said she and husband Chris could not just let her play like a regular child, but had to keep a constant watch on her because the seizures could happen at any time.

The family is encouraging people to learn more about the condition, given EAA estimates there are 250,000 Australians living with epilepsy.

"Epilepsy Action Australia have been fantastic with the support offered," Mrs Lyle said.

"Epilepsy has put a lot of strain on our family unit, learning and understanding - no one wants something wrong with their child.

"You don't really hear about others going through epilepsy, so it is very isolating."

For more about the Art for Epilepsy auction, visit

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