Liam Higgins is 17 years old. He suffers from a type of epilepsy which sometimes gives him fifty seizures a day.
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On top of that, it’s affected his ability to learn. He has to be taught and re-taught how to blow his nose, for example.
But his type of epilepsy isn't what most people recognise as typical. He is one of the minority of sufferers whose lives are utterly disrupted by the condition.
For him, though, epilepsy doesn’t involve him collapsing, for example – what his mother calls a “drop seizure” – but it does mean major spasms affecting parts of his body which can last from 15 seconds to bursts for up to five minutes. He can have muscle spasms, barely noticeable to anybody else, which go on for two hours.
Purple Day on Monday has been designated as a day to raise awareness of epilepsy, and Liam’s parents believe it’s an important chance for .everybody to learn more about an affliction which is often hidden in plain sight – most people who suffer from epilepsy (though not Liam) lead normal lives, with the condition controlled by diet or drugs.
Liam’s mother, Kay, would like people to know that there are 40 different types of epilepsy and it doesn’t just involve the obvious ones where a person collapses in a fit of spasms.
She thinks there is less ignorance now than there was – at one time, she said, people believed you could catch epilepsy (which you absolutely can’t).
She and her husband, Ian, have learnt the subtleties of the condition. Sometimes Liam has a seizure where he becomes almost unconscious but with his eyes open. “We can tell by looking in his eyes, or the colour of his arm will go all purple”, she said.
“He’s never been unconscious in a seizure so we can keep talking to him.”
This means Liam is going through a traumatic event where the brain function is in disarray (a bit like an electrical malfunction) but nobody around might notice.
There is an attack called a gelastic seizure which involves a sudden burst of energy and the victim can’t stop laughing or crying for no apparent reason. It is uncontrollable and obviously extremely unsettling for a witness who doesn’t realise what’s going on.
Kay and Ian – and 17-year-old Liam – have learnt to live with his situation. Liam needs nine different types of tablet a day, for example, to minimise the risk of seizure. His parents know what triggers one – humidity tiredness and stress are on the list.
In 2007, he had brain surgery to try to lessen the effects of the epilepsy.
Their lives are not easy. Liam’s father, ian, used to sleep with him because that reduced stress. His mother doesn’t work because she has to be ready to go whenever he has difficulty.
At the moment, he’s in Glen Innes High School but, when he his school days are over, his mother thinks he will need some form of sheltered occupation. Kim says there are lots of good kids at the school who treat him well.
She said: “We don’t know what the future is. We can’t plan. You have to go day by day”.
Love keeps her going: “It’s your child. That’s it. He’s your child. You just want to do the best for him.”
(There’s more information about epilepsy at www.epilepsy.org.au)