School bullying suspected trigger of Ipswich girl’s life threatening battle with neurological condition

“I came out to find her face down in the pillow, suffocating”: The mother of a 7-year-old Ipswich girl says she had been a ‘normal’ healthy child, but one emotional event may have triggered a lifelong battle with a severe neurological disorder.

Rosalie Tobler has spent more time in hospital due to epileptic seizures in the last 12 months than out, her mother says.

“Mummy, my brain feels funny” was her mother’s only warning that 7-year-old Rosalie was about to be thrust into a lifelong struggle with epilepsy.

In August 2022, Rosalie Tobler began to feel unwell and her mother Lani thought perhaps the little one was experiencing her first headache.

But within moments Rosalie was on her back, convulsing, experiencing her first of what would become hundreds of full-body, tonic-clonic seizures which she experiences both awake and while she is asleep.

Lani Tobler says the Queensland Children's Hospital and the Starlight Foundation Captains have been a light in the dark for Rosalie's care.

She often wakes with her body feeling as though she has run a dozen marathons, but she has no memory of why she feels that way.

“They say that a 30 second seizure leaves the body feeling similarly to the way an adult would feel after running a marathon,” Lani Tobler said.

“Rosalie’s longest seizure went for 25 minutes. She knows she’s had a seizure overnight when she wakes up in the morning with full body pain and its difficult to walk.”

Doctors initially dismissed Ms Tobler’s concerns about the first seizure, telling her that young children often had them without any underlying reason.

But quickly it became clear there was more to Rosalie’s condition as she began to experience severe seizures daily, and tests indicated she had an underlying neuro-migrational disorder that she had been born with that was causing epilepsy.

Ms Tobler said that many people with the same condition may not ever have symptoms present themselves, but that patients, liker her daughter, who experience a significant emotional trigger could become symptomatic.

Rosalie Tobler.

“The hospital that diagnosed her, they investigated everything, they went through her whole past, family life, all of that,” she said.

“The only thing that we could really put it down to that was the most emotionally triggering thing in her life was that she was getting bullied at school.

“She’s always been a sensitive child, sensitive in the way that she just wants to love and care for everybody and she will and she does, so it hurts her that little bit extra when people aren't loving.

“So that's all that we can really put it down to that it was possibly triggered by her being bullied. Its insane to think that that’s the reason why.”

The kind-hearted seven-year-old just wants to love and care for everybody, her mum says.

Rosalie requires around-the-clock monitoring, which for Ms Tobler, can be a truly exhausting and terrifying endeavour.

“I can’t even go do the dishes without being terrified,” Ms Tobler said.

“I can’t even put it into words, I have the risk of losing her with every seizure and I don’t think people realise how big of a deal these seizures actually are.”

“Beyond exhausted is just my permanent state right now, but as a mum you will do anything and everything to protect your child.”

Lani and Rosalie Tobler

Rosalie’s most recent hospital admission came after a heart-wrenching 25 minute seizure, which occurred after Ms Tobler made the already difficult decision to take a moment to have a shower- an opportunity that she doesn’t often get without someone able to watch Rosalie.

“I had convinced myself it was OK to go and wash my hair, and I know that sounds really silly, but I convinced myself that she would be OK while I went to take that time to have a shower,” she said.

“I came out to find her face down in the pillow, suffocating.”

This incident prompted the terrified mum’s decision to start a GoFundMe, to raise money for lifesaving medical aids, including an anti-suffocation pillow and seizure activity monitoring camera, which Ms Tobler says will change their lives.

Lani and Rosalie Tobler, June 2023. Photo: TamCam Images

After moving away from a lifelong support network in Hervey Bay, to Ipswich in order to be closer to the Queensland Children’s Hospital, the Tobler’s have been left without that ‘village’ that every family needs to raise a child, let alone one with complex medical needs.

The GoFundMe will cover the cost of the medically-graded pillow, a camera which will sound an alarm any time Rosalie has a seizure and a hospital-grade monitoring system that will allow Ms Tobler to keep track of Rosalie’s oxygen levels, heart rate and more, keeping the pair out of hospital.

“We’ve spent more time in hospital than out recently, and when Rosalie comes out of that post-diptal state after a seizure, she just wants to be home, she wants to be with her toys,” she said.

Ms Tobler has recently had to make the difficult decision to transition Rosalie to homeschooling, due to the stress attending school was causing Rosalie, and triggering further seizures, and the youngster has also returned to sleeping with her mum for safety and security for them both.

“Now she is having alert seizures and so sometimes she gets an aura, which is like her brain warning her a seizure is coming and she will say ‘mummy my brain is feeling funny’ and we will lie down wherever we are and talk it through and wait for it,” she said.

“Its heartbreaking and terrifying.”

“There’s no way that I can fix it for her, which is so hard because I’m mum and mum should be able to fix everything.”

Originally published as School bullying suspected trigger of Ipswich girl’s life threatening battle with neurological condition