At 10-years-old, Eloise O’Donnell was dealt a devastating card. A brain-eating disease that took two years for diagnosis and consequently surgeries that left the 13-year-old with half her brain.
Now, Eloise’s family want to share her story so others can recognise the signs.
Eloise is the youngest in the O’Donnell household, daughter of Deb and Luke, and sister to Gracie and Lane.
Her story starts as a happy-go-lucky girl in 2020, who loved life and joking around. As every child should.
Everything changed when the year four student fell victim to her first seizure, and what followed was a steep decline in health and confidence.
While others were experiencing childhood in their final years of primary school, she was living with unrelenting seizures which became nauseating on the body and mind.
Her family watched as she became a shell of herself and despite seeing this horrifying decline in health, mother Deb said it was not taken seriously.
From the outside, it was difficult for others to understand the gravity of the situation which left Eloise misdiagnosed.
“A lot of [the doctors] did not see [the issues] in the times between the appointments, because it was so silent it was not known,” Deb said.
To an outsider, Eloise’s condition seemed behavioural and possibly a symptom of medication.
“My daughter is not like that at all, she never was,” Deb said.
The family knew there had to be more but even they could not have known the severity of the situation.
“Eloise was very funny … always made jokes and wanted to make everyone laugh and it just disappeared,” Deb continued.
“To the point where she would go to her room and cry because she didn’t know what was going on.
“And the dead stares. You would have to hold her up because she was going to fall to the ground. All these things that happened, the saliva and the twitching, and all those things that were not right.
“It just took a long time to be heard.”
The seizures were made most obvious by the physical convolutions they caused.
“It went from one a fortnight to once a week, to two a week … and then all of a sudden at Christmas time [2021] she had a five-hour seizure in Gunnedah Hospital,” Deb said.
The diagnosis was initially unclear as Eloise responded by squeezing the doctor’s hand, however, she did not blink for five hours straight.
“She just lied like a statue, she would not move, so [hospital staff] thought it was a behavioural thing from the medication,” Deb said.
“I believed it was more than that.”
Deb said there were tell-tale signs of a seizure beginning but without the shaking.
Then things began to turn.
“I thought she was having a stroke,” Deb said.
Eloise’s right side was drooping and shaking so she was rushed back to the emergency room.
Eloise was signed over to Westmead Hospital and flown to Tamworth at midnight.
“We got to Tamworth and spent a very sad and miserable and not very nice time in Tamworth for three days,” Deb said.
Eloise underwent several tests including an MRI and ultrasound.
The hospital performed a lumbar puncture which confirmed something was not right. The results were sent to John Hunter Hospital which was how Dr Smith became involved.
The family finally felt like it was heard.
O’DONNELL FAMILY: Gracie, Eloise, Deb, Luke and Lane O’Donnell.
Eloise had just finished year five but her condition would only continue to worsen, with an attendance of just 18 days in the following year.
There were revolving changes in medication which failed to stop the seizures.
About six months after meeting Dr Smith, a vile taste appeared in Eloise’s mouth.
“You could see the look in her eyes that something was not right,” Deb said.
This led to more medication changes.
A twitch then moved to her right eye occasionally, which eventually eased before her mouth began.
After three days, her whole face suddenly began spasming.
Eloise was in Sydney the next day.
“It was the worst EEG [the staff] had seen in a long time because both left and right [sides of the brain] were going for it,” Deb said.
Eloise spent two and a half weeks there where she underwent more treatments including steroid treatment, IV treatments and “so, so many kinds of infusions”.
Despite the relentless tests and treatments for the 11-year-old, none of it was working.
The doctors excelled to a more dangerous BQ infusion which had required staff to watch her 24/7.
“It did not work … we did not know what was going on and we were getting a bit more worried. They could not figure out what it was,” Deb said.
An epileptic neurologist Dr Gill, from Westmead Children’s Hospital wanted Eloise transferred to him, as he had suspicions after talking with her doctor.
Rasmussen Encephalitis is a brain-eating disease in which there is progressive neurological and cognitive deterioration.
There is no known cause of the disease.
After another MRI, lumbar puncture, PET scan and tests, Dr Gill collected enough information to back his belief.
Young Eloise was sent home with more medication which gave the doctor time to research, talk to his peers and prepare for the next step.
Even though there was now an explanation to Eloise’s sickness, there was yet to be a solution found in treatment.
Eloise went through 10 different medications and nothing had worked.
More concerning was the disease was spreading from the right side to the left side of the brain.
“The damage is believed [to be equivalent to a] stroke,” Deb said.
“From the last three years, it has just been going further and further downhill.”
Dr Smith believed the slow-eating virus may have been active for two to three years, where it only became more aggressive as time progressed.
Eloise was living life with seizures nonstop and suffered from five different types.
Her focal onset repair frontal lobe operation was pushed to Tuesday, November 14, 2023, only a few short weeks after finding out about the surgery.
The Gunnedah Times spoke with Deb, Luke and Eloise before her initial surgery last year and at that point, there was no certainty of what life would look like after the surgery.
Eloise had already lost a lot of communication and she could no longer chew because her tongue was always moving.
The effect of her condition meant she was no longer interacting and experiencing life as an average 12-year-old Aussie.
The unknown of what the outcome was the most terrifying part for everyone.
“They say to think of the worst scenario and I don’t say it because I don’t know what that is and they don’t know either,” Deb said.
They knew Eloise would need education and disability support, regardless of whether the surgery was performed.
Function on the left side of the body was expected to be limited due to the right controlling it.
But Eloise was desperate for the seizures to stop and her parents wanted to bring home a happier child. Being seizure-free outweighed the likely side effects with Deb saying, “we cannot live like this anymore”.
“[Eloise was] kind of to the point where she didn’t want to come home last time. She wanted Dr Dexter (the surgeon) to do it [then],” Deb said.
“She cried, she did not want to go home, she wanted to fix it, she had enough.”
Eloise was also offered chemo treatment, which would just delay the growth of the disease but eventually it would become more difficult to recover from.
“We have been through so much stuff and there was nothing else working, how much more? She [was] on her highest dose of medication for her age and weight,” Deb said.
The family was not excited but grateful the surgery was going to happen.
“We just wanted the best outcome, as anyone would.”
The first operation was not successful in stopping the seizures.
Both sides of the brain were active during the operation and Eloise was seizing the entire time despite being medicated.
Her facial movements had however been resolved other than a slight mouth twitch.
It took three days for her to wake properly which was a concern but natural for some people after a big surgery.
There was hope that by taking the frontal lobe, Eloise would not need the hemisphere which would mimic the aftermath of a stroke.
After receiving the surgery, the doctor was able to confirm from a brain biopsy it was Rasmussen Encephalitis.
Eloise was originally booked in for the hemisphere surgery in late March, but was pushed forward to February where the right side of her brain was removed.
She experienced further setbacks when infection became present and needed surgery again so doctors could put in a fluid drain and a midline for antibiotics to be given for three weeks.
That one surgery became five to remove the infection from the brain.
In April, she was placed with a shunt implant by Dr Dexter and his team.
Deb has sung the praises of the surgeon and team, referring to him as the “miracle doctor”.
The family has felt much support from the Westmead’s Children’s hospital staff, from the doctors to the nursing staff.
Young Eloise has to continue to be strong. She is now a teen who has to learn to walk and use the left side of her body again.
“It is hard to tell the story because I don’t know how much to tell,” Deb said.
“I think of Eloise but then I think there are so many parents out there who go to a doctor with their children and they are trying to say what is wrong with the child and the doctor says ‘there is nothing wrong’ … and [they are] not getting heard.
“Doctors need to listen to parents sometimes because they do kind of know their kids more.
“It might not be the medical side of things but they certainly know with behavioural and issues when something is not right.
“It has been a long road. For a parent who has a sick child, that doesn’t know what is going on but knows something is not right and not getting heard has been the hard one for me.
“And knowing that this maybe could have been prevented two years ago if [healthcare professionals] took it a little more seriously.”
