Last year Goldie Elsum's parents had to make the heartbreaking decision to allow doctors to operate and "disconnect" the left side of their toddler's brain to help stop the 100 seizures she was having each day.
The couple hoped it would be the final chapter of the long journey their little girl had been on since she was diagnosed with a rare and aggressive form of epilepsy at just 10 months old.
But the surgery hasn't been the success they were hoping for their little "golden girl" who loves to give big cuddles and will be friends with anyone.
And now parents Charlene and Col are facing the prospect of another surgery - one that has never been done on children before.
Their home town of Camperdown has rallied behind Goldie and has raised more than $20,000 through a GoFundMe which they will use to help renovate their home with ramps, an accessible bathroom and wider doorways to cater for her walker.
Charlene said she had always resisted her friends' requests to help them out with a fund-raiser because she felt guilty taking other people's money, but this time she reluctantly agreed. "It's just amazing how much the community has got behind her," she said. "She needs someone with her all the time, so I can't work."
At 10 months old Goldie had what they thought was her first seizure, although at first they didn't know that's what it was. She went limp, turned red, lost consciousness and stopped breathing but by the time the ambulance arrived she appeared fine.
In hospital she suffered more seizures and, after being flown to Melbourne, she was diagnosed with epilepsy. "I naively just thought we'd give her medication and she'll be fine, worst case scenario she won't be able to drive," Charlene said. "That's what we thought that we were dealing with." In hindsight, Goldie was probably having seizures a lot earlier than that, Charlene said, but they weren't noticeable.
A few months later on Christmas Day, she noticed Goldie's head started dropping. It turned out to be a new type of seizure, Charlene said, one that was "really damaging and you need to get on to straight away". A week later on Goldie's first birthday she was having hundreds of spasms which led to a diagnosis of infantile spasm.
"We started our journey of lots of medication, things not working, seizures continuing. I wouldn't even know how many types of seizures she had had or does have," Charlene said. "When she's bad it could be 100 seizures a day. They might just be small ones that other people wouldn't even know that was happening.
"At the moment she will have one or two tonic clonic seizures a day. It's just like her body is running a marathon. She's exhausted."
As well as medications, Goldie had been put on a special Keto diet that involved daily blood tests and twice-weekly nurse check-ups. "We thought that was helping, but her next EEG after that showed that she had really gone down hill and that's when they mentioned surgery," Charlene said.
"They were keen to do it ASAP because it was so bad. Scans had shown that the left side of her brain didn't develop properly in utero, so the theory was disconnect the left side and then she can have one healthy side.
"We felt like we didn't really have a choice otherwise it was just going to take over her whole brain. This was like our last resort I guess. We thought it would be the final chapter."
So on June 30 last year, in the middle of Victoria's COVID-19 lockdown, Goldie underwent a 12-hour hemispherectomy surgery at the Royal Children's Hospital in Melbourne.
Agreeing to the surgery was even more heartbreaking for the couple because in the months before Goldie had finally begun to walk - something they weren't sure she would ever be able to do. However, doctors had told them that without the surgery, the skills Goldie learnt would probably regress - and it was something they had already seen happen with other milestones. So, despite knowing that the surgery would mean Goldie would lose movement on her right side and half her vision, they felt they had no choice to but say 'yes' to the operation.
"It was so heartbreaking to take that off her when that was the one thing that she had achieved. We're still hoping that she might walk again but we just don't know," Charlene said. "Signing that form was just gut-wrenching. I can't even explain it. It was the worst feeling ever.
"That was just as hard as when I had to leave her for surgery. Just give her a kiss and just walk out. I was strong until that point. I just burst into tears."
Because Melbourne was in the middle of lockdown, coronavirus restrictions meant both her and her husband couldn't be there for her when she was wheeled in to surgery. "Only one of us could be there to give her a kiss. Only one of us could be there with her in recovery," she said.
A week later their "hearts just sunk" when they noticed Goldie began to jerk and twitch again. At first doctors thought maybe it was just the brain settling down but they got stronger, more frequent and haven't stopped since. "Her last EEG showed it's now on the right side of the brain," Charlene said. "So it's taken over and her brain is just like a little electrical storm just going constantly.
"Even though she might not be actively having a seizure, she's got constant seizure activity. It's just meaning she doesn't have a chance to develop at the moment. It's crazy to think right now she is functioning on half a brain." They had arrived in Melbourne for the surgery thinking they would be able to travel back and forth, but once they arrived in Melbourne they were "locked in" because of the pandemic lockdown. "It was a long hard stretch," she said.
Just three weeks after Goldie's surgery, Charlene gave birth to a little boy, Rocky, who decided to arrive two weeks early. "I had a kid in each hospital," she said. "It was a bit surreal. If someone had told me when she was born this is what we would go through I would have said 'no way, we can't do that and get through that'. But you just do."
After two months they were allowed to return home. "I had a one-month-old baby. A girl who could walk and now I'm bringing her home and she's struggling to sit up. I put her on the floor to play and she just cried and she looked around the room like 'how do I get to my toys? I can't play with my toys'," Charlene said.
"She has gone from being able to pick things up to now only having use of one arm. We really thought surgery would be the last step, but we keep going."
Almost a year after the surgery, Charlene said they were nearly out of treatment options. "We're just cycling through medications trying difference combinations. Sometimes the side-effects from the medications are worse than the seizures," she said.
Another surgery could mean losing even more movement. "We're a bit hesitant with that because she is really already limited in what she's got. You don't really have a whole lot of options," she said.
Doctors don't know exactly what has caused Goldie's condition. "We've had some genetic testing and they're doing more. They took some brain tissue from the surgery. They've taken some of our DNA to test that," she said. The latest diagnosis for the epilepsy is Lennox Gastaut Syndrome and Focal Cortical Dysplasia explains the brain not developing properly.
Goldie is developmentally around nine months, and they don't know if she will ever be able to talk but she loves music and is a "bit of an adrenaline junkie" loving "anything that's fast and throws her around like swings". To donate: search Goldie's Dream at GoFundMe.