Specialists have given little Heidi Smith a 40 per cent chance of survival after diagnosing her with a rare brain cancer - yet her parents don't reckon they've taken into account her "fighting spirit".
The 13-month-old Barrack Heights girl had just endured major spinal surgery in March when Stacy Douch and Tom Smith noticed her head constantly tilting to the right - something they initially put down to the surgery.
Yet it didn't go away and while doctors suggested torticollis - when the muscles of the neck spasm and cause the neck to twist to one side - that didn't sit right with the couple. After Heidi's symptoms worsened - she started vomiting and became lethargic and irritable - they demanded an MRI.
"Heidi was born with a type of spina bifida called lipomyelomeningocele, and in March she underwent spinal surgery to detether her spinal cord and remove the lipoma that was attached to it," Ms Douch said.
"It was a success and she showed us all just how strong she is when she bounced back from that so quickly. But then her head started tilting dramatically and she just went downhill.
"When we finally got in for an MRI at Wollongong Hospital on May 6 we hoped for the best, but instead they sat us down and told us they'd found a large brain tumour."
Heidi's neurosurgeon at Randwick Hospital, Dr Saeed Kohan, was consulted and she was immediately transferred to Sydney, undergoing surgery the following day.
"After seven hours we received a call that the surgery went well and they think they got all the tumour," Ms Douche said.
"Yet several days later we got the terrible news that she had an extremely rare and aggressive malignant pediatric tumour called Atypical Terratoid Rhabdoid Tumour, or AT/RT.
"It can grow back very fast and needs an aggressive form of treatment. She now has a limited window before the tumour is likely to start growing back, so is due to start chemo next week."
For the next 12 months, Heidi will have to undergo an intensive protocol of chemotherapy, which will include six weeks of radiation. The treatment to try and save her life itself comes with risks, yet there's no other option.
"I'm sitting here grieving the life she should have and could have had, knowing that nothing is ever going to be the same," Ms Douch said. "It's breaking my heart."
She does take comfort in her daughter's resilience.
"Heidi has always been the most fiercely independent baby - she's very strong-willed and determined," she said. "She's a fighter - she's been through so much already and overcome it.
"She is a bit scared of being in hospital though, she's sick of being poked and prodded, and this is only the start - it will take its toll.
"The prognosis isn't great - she's got a 40 per cent chance of surviving this. But we reckon that just by being Heidi gives her an extra chance of beating this."
It's a tough time for the couple - who've had to leave their four-year-old daughter Myah in the Illawarra with family while they stay in Sydney. The COVID pandemic - and restrictions on travel and hospital visitation - though necessary, have also caused angst.
Loved ones are supporting the pair, raising $15,000 through an online fundraiser to help with expenses as they stay with their daughter for the next year. To help, visit 'Heidi's Battle Against ATRT' on gofundme.com