Mum's fight for answers after her daughter, 13, died suddenly in her sleep as she reveals doctors first dismissed her constant epileptic fits as a cry for attention: 'It was disgusting'

  • Charlotte Studham, 13, from Victoria died in her sleep earlier this month
  • Her mother has shared her story to raise awareness about epilepsy
  • She died from suspected Sudden Unexplained Death Epilepsy (SUDEP) 
  • Charlotte suffered daily seizures and at her worst suffered 80 seizures a day
  • The teenager also suffered from functional neurological disorder (FND) 

A young girl who died suddenly in her sleep after suffering epilepsy for years including up to 80 seizures a day has been remembered for her 'wicked sense of humour'.

Charlotte Ivy Studham, from Geelong, southwest of Melbourne, died just a few days shy of her 14th birthday on November 3 from suspected Sudden Unexplained Death Epilepsy (SUDEP).

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Similar to SIDS in babies, the condition refers to the sudden death of a person who has epilepsy, despite them seeming otherwise healthy.

Charlotte was diagnosed with the disorder at the age of five but 'went downhill' four years ago and started suffering daily seizures.

Her shattered family said the seizures 'impacted every aspect' of her young life, as well as the lives of her loved ones. 

Charlotte Ivy Studham, from Geelong, southwest of Melbourne, died just shy of her 14th birthday on November 3 from suspected Sudden Unexplained Death Epilepsy (SUDEP)

Her mother Brooke Studham said her daughter had both epilepsy and functional neurological disorder (FND), which saw her suffer non-epileptic seizures as well. 

Ms Studham said it was hard to distinguish between which seizures were epileptic and which weren't.

Charlotte would often drop to the floor and start convulsing for 30 seconds, whereas other times, a seizure would involve her staring blankly for a brief moment - otherwise known as an absence seizure. 

'When she was convulsing, Charlotte could hear everything but she couldn't move, she said she felt like she was trapped in her body,' Ms Studham told Daily Mail Australia. 

Ms Studham said while her daughter mostly received great medical care, because there is such limited information into FND, some doctors thought Charlotte was putting it on for attention.

'It was disgusting,' the mother said.

'They'd say ''this is all in her head''.'

Charlotte loved to dance and was getting ready for her first dance concert
Charlotte died just a few days shy of her birthday with her mum still fighting for answers

 Ms Studham said there were no warning signs before Charlotte lost her life.

'She went to bed and didn't wake up,' she said.

She has opened up about her daughter's story to raise awareness about epilepsy and SUPED.

The family were constantly monitoring Charlotte and had cameras in her room to check on her regularly, but say they're still searching for answers as to why her illness claimed her life.

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Ms Studham said even the post-mortem wasn't able to determine whether Charlotte had had a seizure during her sleep.

The 13-year-old spent years in and out of hospital and, at her worst, suffered 80 seizures a day, which were believed to have been mostly non-epileptic.

In August she was hospitalised for five days after suffering 11 epileptic seizures.

'It was like she had had a stroke,' Ms Studham said.

'She forgot things, and couldn't even remember a recent family trip to Cairns, even when I showed her photos she didn't remember.' 

Charlotte's family have launched a fundraiser to help raise awareness about complications with epilepsy

 During her seizures, her family would follow her around the home and wait for her to come to, but at times she'd have to go to hospital.

'I think we met every paramedic in Geelong,' Ms Studham said.

'She couldn't go to the bathroom alone, she couldn't shower on her own, we had to watch her.'

But her family were determined to give Charlotte the most normal life possible, letting her attend dance classes and even ride motorbikes. 

Charlotte attended school, but only for 12 hours a week, though under the supervision of her mother was able to attend school camp.

WHAT IS SUDEP? 

'SUDEP refers to Sudden Unexpected Death in Epilepsy 

In SUDEP cases, no other cause of death is found when an autopsy is done

Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures

The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure

Over one-third of the time, there is a witnessed seizure or signs of a recent seizure close to the time of death. They are often found lying face down

No one is sure about the cause of death in SUDEP and it may differ between cases

Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure lead to death.'

Source: Epilepsy Foundation 

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Ms Studham said her daughter was bubbly, was always trying to make people laugh and loved to dance.

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'Her first concert was next Saturday, she'd chosen an outfit and I was ready to be a dance mum,' her mother said. 

'She was so full of life, even when she was in hospital at her worst she was still trying to make everyone laugh.

'Most adults can't find the strength to do that.'

In the lead up to Charlotte's death, she was suffering one non-epileptic seizure a day.

'We spent a lot of time in and out of hospitals, so many tests and investigations which unfortunately all lead to no clear answers,' Ms Studham said.

'But she took it all in her stride and never let it stop her.'

Ms Studham is hoping by sharing her story, she will help 'normalise' epilepsy and make sure those living with the disorder are included.

'These kids are much more than their diagnoses,' she said.

'Epilepsy is a silent killer.' 

Ms Studham said her daughter loved music, animals, their pet dogs, dancing and playing with dolls.

'Charlotte had a wicked sense of humor and wasn't backwards in coming forwards,' she said.

'She touched everyone she met with her huge grin and left hand dimple.'

Her family have since launched a GoFundMe page to help raise awareness about SUDEP, with funds going towards the Geelong Hospital and Epilepsy Australia.

In cases of people who have died with SUDEP, no other cause of death is found during the autopsy.

Every year more than one in 1,000 people who have epilepsy will die from SUDEP, according to the Epilepsy Foundation.

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It's the leading cause of death in those with uncontrolled seizures. 

A private funeral will be held for Charlotte on Monday.

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