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Telling friends that their daughter had been found dead is the hardest thing Tom Mort has done in his life. It left him feeling powerless, so he's doing something about it.
A rare disorder has claimed the lives of several bright young Australians as parents call for more awareness about the fatal condition. Sudden Unexpected Death in Epilepsy, otherwise known as SUDEP, is a complication of epilepsy that occurs with no warning signs, causing the sufferer to die unexpectedly and prematurely, often while sleeping. The result leaves families scrambling for answers that doctors cannot provide given the near-total lack of information and research into SUDEP. Doctors say one in 1,000 people with epilepsy dies from SUDEP every year - about 280 Australians - but devastated families are demanding more from experts than just statistics.
Anna, Judah and Maddie all had epilepsy and they died from a rare and under-researched condition called Sudden Unexpected Death in Epilepsy (SUDEP). Their families, carrying the weight of unimaginable grief, are determined to find answers, but little is known about SUDEP and why it occurs. Anna set an alarm to wake up in the morning before drifting off to sleep. The next day her parents heard her alarm ringing continuously and called out to her. They then went to rouse her but she wouldn't wake. Gold Coast girl Anna Fairleigh, who died from Sudden Death from Epilepsy (SUDEP). In a cruel twist of fate, Anna's life was cut short the same day her parents were due to celebrate their 21st wedding anniversary.
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