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Rare epilepsy takes toll on teen’s family

KEILOR Downs mother Maggie Zeffiro says she would love to work but knows it would be too hard for her to have a job.

That’s because she lives in constant fear her daughter Vanessa could suffer from a life-threatening seizure at any moment.

The 18-year-old suffers from a rare type of epilepsy known as Dravet syndrome, which is difficult to control even with medication.

She usually has seizures three times a week and has to sleep in her parents’ room so they are aware if she stops breathing during an attack.

The seizures mostly happen at night and often cause Vanessa to stiffen, fall to the ground and jerk uncontrollably.

Mrs Zeffiro says her daughter’s condition can put a strain on the family.

“We can’t really plan ahead and Vanessa rarely gets to go to friend’s birthdays and family functions because she’ll have a seizure and won’t be well enough to go,” she says.

“I haven’t worked in about 15 years and my husband works at the airport and takes extra shifts whenever he can to support us and pay for Vanessa’s treatment.”

Mrs Zeffiro wants to raise awareness about the different types of epilepsy during the current Epilepsy Awareness Month.

“A lot more people now know about epilepsy, but not many know much about Dravet syndrome,” she says.

Mrs Zeffiro encourages people to support Purple Day on March 26, the global day for epilepsy awareness.

She and her husband John have also set up a website to support families around the world living with Dravet syndrome.

Visit dravetsyndrome.com

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