Charlotte Studham was like any other Victorian teen in a country town.
A passionate dancer with “a smile that lit up the room”, the Bannockburn girl was making final preparations for an upcoming performance with a tight-knit group of family and friends.
But she never got her chance to finally take the stage.
Watch the latest News on Channel 7 or stream for free on 7plus >>
On November 3, 2021, ahead of her 14th birthday, Charlotte died in her sleep.
“We would do anything to have her back,” her mother Brooke told 7NEWS.com.au.
“But I take comfort knowing she was at her house when she passed and with people that loved her.”
Charlotte was an exuberant young teen with a “wicked sense of humour” who lived a mostly normal life in the rural town near Geelong.
She also suffered from epilepsy.
The condition which eventually took her life was one that affects just over one person in 1000 diagnosed with epilepsy; Sudden Unexpected Death in Epilepsy (SUDEP).
The condition, experts say, occurs when people with epilepsy die suddenly and unexpectedly, and there are no signs of trauma or any other alternative cause of death.
Charlotte was first diagnosed with epilepsy at just five years old.
Over time, the illness progressed to the point where she would frequently suffer from debilitating seizures.
“She actually had 11 seizures in the one day,” Brooke said.
“She went to hospital one time where she spent four days and was unable to talk or walk and lost part of her memory.”
After this particular stay in hospital, Charlotte was heartbroken to find that she could no longer remember her dance moves.
“Something like that is scary enough to start forgetting things when you’re older, let alone when you are so young,” she said.
Charlotte continued to experience epileptic tonic-clonic seizures – a severe and debilitating type of episode – in the lead-up to the night she died.
Brooke now says she believes Charlotte’s changing hormones and different medications may have played a role in triggering the extreme seizures.
Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people diagnosed with epilepsy.
Researchers say there is still little known about SUDEP’s exact cause.
They do, however, know of potential risk factors, senior research scientist at the Centenary Institute Dr Richard Bagnall told 7NEWS.com.au.
“People that are at the highest risk are those who experience tonic-clonic seizures, and this is the type where you often see people gripping their hands and clenching their teeth and are very rigid,” he said.
Bagnall explained the risk of SUDEP increases five-fold for those who have one or two of these seizures each year and 15-fold for people who have three or four of these seizures per year.
“So if you have patients who are experiencing these seizures they are at a high risk of SUDEP,” he said.
In Charlotte’s case, Bagnall added, the other risk factor was experiencing these particular seizures at night.
“Most of these deaths happen at night and are unwitnessed,” he said.
“Because if they are alone, and laying face down in their sleep, they can’t correct themselves.”
Bagnall said much more research still needs to be done in order to prevent similar tragedies from striking more families.
“The families this has happened to will be searching for answers and reading all sorts of articles to try and make sense of it,” he said.
“But the reality is we just don’t know at this stage, and we don’t have those answers.”
Brooke says while her family continues to try and make sense of Charlotte’s death, they remain grateful for the life she was able to still lead despite her illness.
“We still did everything she wanted to do – and we do wish we’d done more – but we still rode motorbikes and still tried to let her be a kid,” she said.
“She was just amazing and had a wicked sense of humour and a smile that lit up the room.
“But now her birthday is coming up in January and there is going to be a lot of those firsts without her, that we are going to have to navigate.
“So I need something to hold on to, which will be getting this out there and trying to raise awareness, and help other people, because that’s what Charlotte would have done.”
Brooke went on to describe Charlotte as the kind of person who loved helping others.
“That’s just how she was, she would be the first one to take the shirt off her back in hospital if someone needed it, or to give up her teddy to someone who was not coping,” she said.
“She was amazing like that.”
The family has organised a GoFundMe to help raise money for organisations including Geelong Hospital and Epilepsy Australia.
‘This is my mission now’
Despite their grief, the Studham family is now speaking out about its story in a bid to raise awareness of the little-known issue.
“This is my mission now, to try and bring awareness as our family tries to find our new normal,” Brooke said.
“You know even some of our own close friends weren’t aware of the risks, so we are just trying to speak out.”
Brooke added that she believes parents should always be standing up for their children and questioning when things don’t feel quite right.
“To any parents going in and out of the hospital system, I’d say don’t ever think that you’re a horrible person for standing up and saying, ‘no this doesn’t feel right’ or getting a second opinion, or even three or four opinions,” she said.
“Don’t ever feel bad about that, because knowledge is power.
“And with Charlotte, we just didn’t know what was going on, so we needed a lot of people involved.
“And at the end of the day it was something that was happening to us, but it’s something you never actually think is going to happen to you.”
Leave a Reply