It was only after the death of his beloved wife Tamieka that Shaun Smith learnt, firsthand, of the devastating impact of Sudden Unexpected Death in Epilepsy.
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Tamieka Smith died in May at the age of 33, leaving Mr Smith and his daughters Harper, 4, and Lily, 8, shocked and devastated.
Mr Smith, of Prospect Vale, said Tamieka was only diagnosed with epilepsy in about 2011.
“We didn’t have any conversations around SUDEP, our management plan was around medications,” he said.
Obviously, having two small children, they were her world and she was theirs ... It’s a hard thing to fathom that she’s not going to be there to watch [the girls] grow up.
- Shaun Smith discusses life after losing his beloved wife Tamieka to Sudden Unexpected Death in Epilepsy
Tamieka was medicated for the condition, and Mr Smith said they felt it was “under control”.
“The morning that it happened, it just seemed like a normal scenario,” Mr Smith said.
“All of Tamieka’s seizures were sleep-related so it generally happened early morning.
“In this instance it seemed fairly normal.
“She went into a seizure, they were very prescribed in how they manifested themselves.”
But Mr Smith said “everything just stopped” and he knew something wasn’t right.
He called the ambulance and Tamieka was taken to hospital.
Her life support was switched off two days later.
“It is a massive, devastating adjustment,” Mr Smith said.
“On Tuesday night we were sitting down having dinner together, and the following Friday we were going to her funeral,” he said
“Obviously, having two small children, they were her world and she was theirs.”
He said the “terrific” support from family and friends since the tragedy had been a huge help.
Mr Smith described his late wife as fun-loving and an utterly dedicated mother.
“Tamieka was definitely the good cop … of our dynamic,” Mr Smith said.
“She’d always have a lot of fun, they’d be on adventures all the time.”
He said she was a “very active” person who was an “incredible martial artist” who had fought and national and international titles.
“It’s a hard thing to fathom that she’s not going to be there to watch [the girls] grow up,” Mr Smith said.
“It is not something you would ever imagine yourself having to go through, particularly in a scenario where you just didn’t know anything, really, about SUDEP at all.”
Just two weeks after Tamieka’s death, her good friend’s brother died of SUDEP.
Mr Smith also learnt of another young Launceston mother who had died of SUDEP in the month before Tamieka.
“I sort of reached out to [her family] … and said ‘I can relate, we went through the same thing,’” he said.
He said it was “quite surprising” to realise SUDEP was “a lot more common” than people know.
“[SUDEP] just wasn’t something we were aware of, then all of a sudden in the space of few weeks, you can make connections really, really quickly,” he said.
“I think everybody knows someone who either has, or who has been diagnosed, with epilepsy, and to sort of not really have that awareness of SUDEP, I think there needs to be a lot more.
“I knew very little about epilepsy [before Tamieka’s diagnosis] ... I was diagnosed with epilepsy myself [in] primary school … when I had a seizure at home.
“I was diagnosed with epilepsy and put on a treatment plan, I tended to grow out of that after a few years though, and never really had any problems after that.”
Tamieka’s father also has epilepsy and is on medication.
“It’s a lot more prevalent than people think,” Mr Smith said.
“But the whole Sudden Unexpected Death thing was new, it wasn’t something that I was really aware of prior to Tamieka,” he said.
“[SUDEP] is prevalent and it is possible, and we just don’t know, we really don’t know why.”
After learning of the devastating effects of SUDEP, Mr Smith is determined to raise much-needed awareness around SUDEP and epilepsy.
“[For people] to not really have that awareness of SUDEP, I think there needs to be a lot more research [about it],” he said.
“The more people that are aware, that have a connection to it, the better, only good can come of awareness and education.”
At Tamieka’s funeral, the family asked people to donate money rather than flowers.
“We raised over $1500 to help Epilepsy Tasmania support Tasmanians who live with or are affected by epilepsy,” Mr Smith said.
About 3 to 3.5 per cent of Australians will experience epilepsy at some time in their lives.
Epilepsy is a brain function disorder that results in recurring seizures.
There is no cure for epilepsy, yet, but most forms can be managed with medication.
However, many people outgrow or have long breaks without seizures.
The rate of SUDEP, which is a sudden, unexpected death of someone with epilepsy who was otherwise well, in adults with epilepsy is one in 3000 people over a one-year period. Epilepsy Tasmania chief executive Wendy Groot said there was an “urgent need” for more research into epilepsy, better treatments and a cure.
Epilepsy Tasmania is encouraging Tasmanians to purchase digital e-cards this Christmas to send to family and friends to raise money. For information, visit Epilepsy Tasmania at www.epilepsytasmania.org.au