Darwin Convention Centre lights up in purple for Epilepsy Awareness and Kailah May
‘You don’t have to live it alone’: The mother of Kailah May who drowned during an epileptic fit has called for more awareness around the ‘silent’ ‘scary illness’.
Northern Territory
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A Darwin family who felt they were kept in the dark about their daughter’s “silent” “scary illness” have lit a purple beacon in order to raise awareness for epilepsy in the Territory.
Nineteen-year-old Kailah May was among the 300 Australians who lost their lives due to epilepsy in 2022 after drowning in her family pool.
The Larrakia, Woolwonga and Marri Ammu woman was sunbaking and nibbling on a bowl of berries for breakfast near the pool on May 16, 2022 when a seizure struck.
Her mother Tara May’s voice still shakes as she described what happened next.
“She had a seizure, And nobody was here,” Ms May said.
It was Kailah’s 14-year-old brother who discovered the teenager at the bottom of the Girraween pool.
The 19-year-old was pulled from the water but could not be resuscitated.
Ms May said her daughter had only been formally diagnosed with Idiopathic Generalised Epilepsy five months earlier, and her family felt like they were in the dark about how to manage her treatment.
Ms May said they received little support from NT Health, even when her medication “seemed to increase the seizures”.
“She was scared, we were always scared as a family because we didn’t want her to go anywhere or do anything she loved because we didn’t understand it enough,” she said.
“There’s a whole big world out there and we didn’t start to find out stuff until we lost her.”
Only two weeks before her drowning Kailah suffered a five to seven minute long seizure, resulting in her mother fighting to organise an urgent scan with NT Health.
Ms May said the specialist called to confirm they could “squeeze” the 19-year-old into an appointment two days after the drowning, while she was headed to the funeral parlour.
“My response was not positive because I was going to make arrangements to bury my daughter for something that I had tried to reach out and get help for,” she said.
Ms May said since the tragedy she had helped other Territory families navigate the complexities of their epilepsy diagnoses.
“We are a bit disadvantaged when it comes to supports, knowledge and education when it comes to epilepsy,” she said.
“It’s a scary illness, it’s a silent illness, and you don’t have to live it alone.”
“If we can’t get the supports from the government sand the bigger people, then we’re going to do it as a community.”
A shining purple light lit up the Darwin skyline to mark Epilepsy Awareness Day on Tuesday evening.
More than 50 of Kailah’s loved ones gathered at the Darwin Convention Centre to remember the 19-year-old and raise awareness for the 250,000 other Australians living with epilepsy.
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