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Family out to save daughter from SUDEP

Young battler

Much-loved: Nickayla Winter at school with her parents Anthony and Larissa Winter.

NICKAYLA Winter’s dream job would be to “fix kids” who, like her, are at a high risk of death from epilepsy.

The eight-year-old St Bernard’s Catholic School student is at risk of sudden unexpected death in epilepsy (SUDEP), which affects one in a thousand people, and in Australia has resulted in about 300 deaths.

Despite only attending school for half a day, to manage the seizures, Nickayla still has big dreams to leave school and study to be a doctor.

“I’m gonna be a doctor when I grow up,” she said.  

“I want to fix kids.  

“Maybe seizure kids, like me.  

“I can talk to their parents when I grow up.”

Nickayla was just one when she had her first seizure, followed by seven more, the final convulsion lasting 40 minutes.

Eight years later, they haven’t stopped.

Her parents, Larissa and Anthony Winter, have transformed their lives to be by their daughter’s side every day.

“When she’s at school, she can get them every day,” Mrs Winter said.

“Her medication is pretty good at the moment and her last big seizure was in December last year (early) and that lasted 25 minutes,” Mr Winter said.

The Winters found out that Nickayla is at high risk of Sudden Unexpected Death in Epilepsy (SUDEP) two weeks ago.

Nickayla’s parents had never heard about SUDEP until a specialist from Melbourne told them about their daughter’s severe condition.

“When she does have a seizure through the day, her oxygen level drops to a stage that it can start shutting off organs, so her heart and all that,” Mrs Winter said. 

“We’re lucky when she’s awake we can get the emergency meds for her and administer them and call an ambulance, but at night time, if we don’t have (a special monitoring mat), we don’t know if she’s going to have a seizure.  

“It’s very emotional to think that and to get told (recently) it could happen.  

“I don’t wish this on any parent.”

The best solution to give Nickayla’s parents peace of mind comes from health technology group Emfit, who developed a monitoring system specifically for people with epilepsy.

A wired mat connected to a monitoring system can be fitted underneath a bed and, in the event of a seizure, the technology sets off an alarm.

“When I mentioned the mats, Nickayla said she wanted to help other kids like that,” Mrs Winter said.  

“She’s like that – she’ll give you the last bit of biscuit she has, just to make you happy.”

The Winter family has set up a fundraising page at www.mycause.com.au titled Nickayla Cause for SUDEP and hopes to raise $5000 for five Emfit mats.

Mrs Winter said Nickayla’s primary school, St Bernard’s Catholic School, Upper Mt Gravatt, had been a major source of support for the family.

“She did have a 20 to 25-minute seizure last year, and (the teachers) were brilliant,” she said.

“When that happened, I could take a breather and know the school does know what they’re doing.

“She’s a tough little kid; everybody loves her.”

– Emilie Ng

Catholic Church Insurance

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