For the first six weeks of her life, Elena Bali was a perfectly healthy baby.
Then one morning she woke up and could not open her eyes.
Nine months later, doctors in Tasmania and Melbourne are still unable to explain why.
The Tolmans Hill family rushed Elena through a string of doctors after her symptoms first appeared, before she was admitted to the Royal Hobart Hospital two days before Christmas.
Her mother, Laura Bali, said doctors initially suspected an allergic reaction or conjunctivitis before Elena’s condition rapidly worsened.
“Her eyes drifted out and she was still not able to open her eyes,” she said.
Doctors also considered botulism, a stroke and a brain tumour, preparing a bed in intensive care in case her condition deteriorated.
An MRI revealed a white spot on Elena’s third cranial nerve in the midbrain, but it was not a tumour or a bleed.
“Till now, they can’t figure out what the white spot is,” Bali said.
After about a month at the Royal Hobart Hospital, Elena was transferred to the Royal Children’s Hospital in Melbourne, where neurologists carried out further testing and consulted specialists overseas.
Despite months of investigations, no diagnosis has been made.
“Her presentation of symptoms is just incredibly rare,” Bali said, explaining that because the condition was not present from birth, many congenital causes have been ruled out.
Elena lost all ability to move her eyes and her pupils do not react to light.
After three months of keeping both eyes shut, she has recently begun opening one eye at a time.
The condition has also delayed some developmental milestones, with Elena only recently starting to roll.
She has since been referred for hydrotherapy and physiotherapy.
The family took over Hobart bottle shop Hop, Vine and Still on Murray Street at the start of the year, balancing the new business with repeated hospital stays and regular trips to Melbourne for specialist appointments.
“It’s been really hard for us as a family,” Bali said.
“It’s been so hard navigating being away from the business.”
They family has started an Instagram page (@eyesonelenka) documenting Elena’s journey in the hope someone, somewhere in the world, recognises her symptoms and can help doctors identify the condition.
They have also launched a GoFundMe to help cover travel between Tasmania and Melbourne, medical expenses, therapies and lost income.
To donate, go here
