They went to sleep and never woke up


Anna Fairleigh, 20, Judah Lehtonen, 21, and Maddie Gill, 22, never met each other but their short lives and the sudden way they died bear striking similarities.

They all went to sleep and never woke up.

These three young people, all of similar age, died just a few years after they finished high school, before they had the chance to forge careers or make families of their own.

Their grief-stricken parents, faced with their child’s sudden and inexplicable death, have been left asking questions of experts who have few answers.

After an exhausting day at work, Maddie Gill took a nap and never woke up. Picture: Debra Tibbotts.

After an exhausting day at work, Maddie Gill took a nap and never woke up. Picture: Debra Tibbotts.

Anna and Maddie were both studying and were excited about joining the workforce in professions they were passionate about.

Judah had only just celebrated his 21st birthday with a memorable family holiday and had been promoted at work.

 

How Dawn Fraser turned tragedy into Olympic triumph

 

Fran Whiting: What makes us happy? The definitive list

 

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).

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.

Judah was listening to an audio book when he passed away. His sister thought he was sleeping, slumped on a chair. But when his employer called to say he hadn’t shown up for work, she checked again and realised he was unresponsive.

CPR wouldn’t work for Judah, but his parents say despite the unbearable heartache, their one consolation was that he looked peaceful. As if he was just sleeping.

Maddie returned home from a shift working at the dental clinic when she told her flatmate she needed to lie down. That night the pair had planned to put up their Christmas tree. But hours later Maddie was still in her room, and when her flatmate went to see if she was awake, she found she had passed away.

There was no warning of their impending deaths. No alarm bells. Nothing their loved ones could have foreseen or nothing anyone could have done to prevent what happened.

Judah and Maddie’s parents were never warned about SUDEP when their children were diagnosed with epilepsy.

SUDEP is when a person with epilepsy dies suddenly where there is no clear cause of death determined after a post-mortem examination. This may be with or without evidence of a seizure.

About 250,000 people across the country are currently diagnosed with epilepsy, according to Epilepsy Australia.

Epilepsy Queensland chief executive Chris Dougherty says SUDEP strikes without reason or warning and it is a condition which impacts about one in every 1000 people with epilepsy.

He says research suggests SUDEP is under-reported, but that about 280 Australians with epilepsy die from it each year.

“The death of a loved one, especially suddenly, is often a difficult and sensitive topic for people to talk about,” he says.

Epilepsy Queensland Chief Executive Chris Dougherty says for people with epilepsy, SUDEP “does not discriminate”.

Epilepsy Queensland Chief Executive Chris Dougherty says for people with epilepsy, SUDEP “does not discriminate”.

“For those people living with epilepsy, however, SUDEP does not discriminate, so the more everyone is aware of the risks, the better prepared they can be to reduce them.”

He says research suggests the primary way to reduce the risk is to maximise seizure control – meaning epileptics should have regular specialist reviews, never run out of medication, and avoid known triggers, which can include sleep deprivation, missed medication doses, fatigue, stress, alcohol or drug use, hormonal changes and poor diet.

One in 10 people will have a seizure at some stage in their lives, but a single seizure doesn’t necessarily mean you will be diagnosed with epilepsy. The process of a diagnosis is often long and difficult for the person and their family.

Dougherty says many children with epilepsy will eventually grow out of it by the time they reach adulthood.

But, for some, they will experience recurrent seizures throughout their life.

Seizures are caused by sudden and increased electrical activity in the brain, which is more than six times the normal rate of activity.

Essentially the brain controls everything that we do. When these electrical path ways get mixed up it can cause a seizure.

For a brief period, this can cause abnormal activity such as strange sensations, unusual behaviours, convulsions and spasms through to loss of consciousness.

Anyone can be diagnosed with the condition at any age.

The cause is not always clear, but commonly it is diagnosed in children under five years or those over the age of 55.

“As one of the world’s most common neurological conditions it’s still surprising the amount we don’t know about what causes epilepsy,” Dougherty says.

“On top of this, about 30 per cent of people diagnosed with epilepsy will not achieve seizure control through medications.

“We need investment in research that helps us diagnose the condition better and faster, that helps speed up the medication regimen, that helps bring new medications to market for those 30 per cent who don’t respond to current anti-epileptic drugs and, so importantly, how we can understand and prevent SUDEP.”

For the families of the young ones left behind, there aren’t enough answers.

They hope their story will shine the light on SUDEP as they advocate for more funding and research to be done in the hope no other parent has to endure the loss of a child.

 

MADDIE GILL

Brisbane’s Maddie Gill was a passionate champion for those with epilepsy and its annual event, Purple Day, which is celebrated on March 26.

It was a day where she would don the colour purple and talk about epilepsy, spreading awareness and raising funds.

She knew how important education was, she knew more research was required for the disorder that she was diagnosed with at eight years old.

Maddie Gill died from SUDEP last year in December.

Maddie Gill died from SUDEP last year in December.

Initially she experienced absence seizures, which usually last a few seconds, and cause lapses in awareness, sometimes with staring or blanking out.

Maddie had her first grand mal (now known as tonic-clonic) seizure three years later in 2009.

She had only four grand mal seizures in total, which are more severe and can involve muscle convulsions, and loss of consciousness lasting about 10 to 20 seconds.

Maddie, her mum, Deb, 49, and stepdad, Chris, 56, were not made aware of the life-threatening condition known as SUDEP. They felt completely blindsided by Maddie’s death on December 5, last year.

“She has left a massive hole in a lot of people’s hearts,” Deb says.

“But a lot of people, like us, are determined to find answers.

“I would have preferred to have known about SUDEP; it just needs to be spoken about, as hard as it is.

“To be left like we have been, in utter shock and despair, that’s not fair.”

Maddie Gill pictured with her mum Deb Tibbotts, sister Lara and stepdad Chris Tibbotts.

Maddie Gill pictured with her mum Deb Tibbotts, sister Lara and stepdad Chris Tibbotts.

On the day Maddie passed away, Deb and Chris recall getting a visit from a police officer at their home in Mount Perry, west of Bundaberg. They knew the second they saw the police car arriving at their home that it wasn’t good news.

“They don’t usually make house visits at 10.30 at night,” Chris says.

“It was the worst night of my life,” Deb adds.

Their Maddie, who had a “zest for life”, an unforgettable smile and a caring nature, was building an exciting future for herself.

After graduating from St…



Read More:They went to sleep and never woke up