Charlotte Studham, daughter of Geelong, dies after being diagnosed with epilepsy while creating GoFundMe

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

Charlotte Ivy Studham, from Geelong, south-west Melbourne, died days before her 14th birthday on November 3 from suspected sudden unexplained death epilepsy (SUDEP).

Similar to SIDS in babies, the condition refers to the sudden death of someone with epilepsy, despite appearing otherwise healthy.

Charlotte was diagnosed with the condition when she was five years old, but she ‘tumbled’ four years ago and started suffering from daily seizures.

His broken family said the crises “impacted every aspect” of his young life, as well as the lives of his loved ones.

Charlotte Ivy Studham, from Geelong, south-west Melbourne, died just before her 14th birthday on November 3 from suspected sudden unexplained death epilepsy (SUDEP)

Her mother, Brooke Studham, said her daughter suffered from both epilepsy and a functional neurological disorder (FND), which also caused her to suffer from non-epileptic seizures.

Ms Studham said it was difficult to distinguish between seizures and those that were not.

Charlotte would often fall to the ground and start convulsing for 30 seconds, while other times a seizure would involve her staring 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 inside her body,” Ms Studham told Daily Mail Australia.

Ms Studham said while her daughter was receiving mostly excellent medical care, as information about the FND was so limited, some doctors believed Charlotte was bringing it to attention.

“It was disgusting,” the mother said.

“They would say ‘it’s all in his head’.”

Charlotte loved to dance and was preparing for her first dance concert

Charlotte loved to dance and was preparing for her first dance concert

Charlotte died days before her birthday, her mother still battling for answers

Charlotte died days before her birthday, her mother still battling 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 spoke about her daughter’s story to raise awareness about epilepsy and SUPED.

The family were constantly monitoring Charlotte and had cameras in her bedroom to monitor her regularly, but say they are still looking for answers as to why her illness took her life.

Ms Studham said even the autopsy was unable to determine whether Charlotte had had a seizure in her sleep.

The 13-year-old spent years in and out of hospital and, at worst, suffered 80 seizures a day, most of which would have been non-epileptic.

In August, she was hospitalized for five days after suffering 11 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 pictures she couldn’t remember.”

Charlotte's family have launched a fundraiser to help raise awareness of the complications of epilepsy

Charlotte’s family have launched a fundraiser to help raise awareness of the complications of epilepsy

During her seizures, her family followed her around the house and waited for her to come back, but sometimes she had to go to the hospital.

“I think we’ve met all the paramedics in Geelong,” Ms Studham said.

“She couldn’t go to the toilet by herself, she couldn’t shower by herself, we had to watch her.”

But her family was determined to give Charlotte as normal a life as possible, letting her take dance lessons and even ride a motorcycle.

Charlotte attended school, but only 12 hours a week, although under her mother’s supervision she was able to participate in the school camp.

WHAT IS SUDEP?

‘SUDEP refers to sudden unexpected death in epilepsy

In cases of SUDEP, no other cause of death is found at autopsy

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

The person with epilepsy is often found dead in bed and does not appear to have had a seizure

More than a third of the time there is a witnessed seizure or signs of a recent seizure near the time of death. They are often found lying face down

No one is sure of the cause of death in SUDEP and it may differ from case to case

Some researchers believe that a seizure causes an irregular heartbeat. Other research has shown that breathing difficulties following a seizure lead to death.

Source: Epilepsy Foundation

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

“Her first gig was next Saturday, she had an outfit picked out and I was ready to be a dance mom,” her mom 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.”

Prior to Charlotte’s death, she suffered from one non-epileptic seizure a day.

“We’ve spent a lot of time inside and outside of hospitals, so many tests and investigations which unfortunately don’t provide any clear answers,” Ms Studham said.

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

Ms Studham hopes that by sharing her story she will help ‘normalize’ epilepsy and ensure that people living with the disorder are included.

“These children are so 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 sense of humor and wasn’t late to show up,” she said.

“She touched everyone she met with her huge smile and dimple in her left hand.”

His family have since launched a GoFundMe page to help raise awareness of SUDEP, with funds going to Geelong Hospital and Epilepsy Australia.

In the case of people who died with SUDEP, no other cause of death is found at autopsy.

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

It is the leading cause of death in people with uncontrolled seizures.

A private funeral will be held for Charlotte on Monday.

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