Imagine your child suffering through an illness that no doctor in Australia could diagnose.
Laura Bali doesn’t have to try hard to picture it.
Because right now she and her husband, Ankit, are living it while their 10-month-old daughter, Elena, battles an unknown enemy.
“She’s testing everyone’s medical degree. It’s frustrating that everyone just comes here and is like, ‘I’m so sorry. I’ve never seen this before’,” Ms Bali told news.com.au.
“We have no answers. They’ve tried so many medications. It’s just getting worse and worse every day.”
Currently, the Tasmanian youngster is in an induced coma after she was admitted to hospital late last week due to persistently biting down on her tongue.
“She was just in so much discomfort, and they couldn’t find any pain relief that really helped,” the 26-year-old mother explained.
Despite every effort to stop her, Elena nearly bit halfway through her tongue, in what doctors believe to be an involuntary pain reflex.
The severe jaw clenching and trauma left her unable to safely consume liquids or food without immense pain, forcing medical staff to insert a feeding tube.
“I tried so hard for her to not have it, but then she was just losing so much weight because every time she would eat or drink, it would get irritated,” she said.
Now doctors have decided to place her into an induced coma, after Elena’s parents spent days watching their baby remain semi-sedated, racing to place a teething ring between her jaws every time she woke up to prevent further damage.
“We just hope that she can return to her normal self,” the mother said.
“She can’t laugh … It’s just so sad seeing her like this.”
Typically, their baby girl is “chatty”, loves spending time outside, listening to music and is always full of smiles.
Which is what makes the long string of hospital stays Elena has endured feel even more cruel.
At six weeks of age, her parents first noticed a concerning change.
“She just woke up one day with her eyes really swollen and wouldn’t be able to open them … A few days later, her eyes drifted out and got kind of stuck facing outwards, and lost the range of movement they had previously,” Ms Bali recalled.
For months, Elena had been unable to open her eyes at all, eventually progressing to opening just one at a time, alternating between each eye.
The search for answers
Initially, doctors suggested a stroke, a tumour or botulism, a rare and fatal illness that attacks the body’s nerves and leads to muscle paralysis.
All were ruled out.
EEG scans have returned clear, ruling out seizures, while even the most comprehensive of genetic testing came back clear too.
They found white spots on her midbrain that they can’t explain and diagnosed her with dystonia, a neurological movement disorder which specialists believe to be a symptom of the larger, underlying mystery.
“Every doctor we see is saying that they’ve not seen something like this before,” Ms Bali said.
They’ve been left with no choice but to take their search global, using the power of social media in hopes they might find a doctor who will finally be able to give them answers.
Doctors currently helping them are digging into contact books, while preparing a report for the family to share.
After Tiny Hearts Education, a platform dedicated to teaching parents about health and first aid, shared Elena’s story on Instagram, the family’s search went viral with complete strangers vowing to send it on too.
“It’s kind of like a whole spiderweb situation. A chain reaction where everyone shares the story,” she said.
“It just makes you feel like you’re not alone in it, and you feel like you’re doing the most you can hunting for those answers.”
The emotional burden has been heavy, but the financial one has been incredibly difficult too, with the family owning a small business bottle shop, Hop Vine and Still, in Tasmania.
“My husband had to take time off leave from work. Because we already spend so much time in hospital, he’s out of sick leave,” she explained.
“We also have a small shop that we have to kind of try and run on the side. It’s all quite difficult.”
Funding through the National Disability Insurance Scheme has been a hurdle without a formal diagnosis, though the family recently managed to receive approval.
“My husband just kept bombarding them with calls… she [Elena] was delayed with her milestones, wasn’t sitting, was rolling really late. It just takes forever to get approved. The hospital also submitted another letter with her condition and they finally approved,” the mother said.
“At the moment they put it through as global developmental delay because that’s kind of the easiest pathway, but obviously once we have a diagnosis, hopefully we can reassess the plan.”
A GoFundMe has been created to support the family while their focus has been where it’s needed most.
They’re incredibly grateful the cry for help is already being heard, while they show their appreciation for the care from hospital staff.
“The amount of care the staff from the Royal Hobart Hospital have is unmatched. They made Elena the cutest braids,” the mother wrote in a social media story.
It’s small acts of kindness and the growing support for Elena’s search that have helped her family while they eagerly wait for their SOS to be answered.
“We are willing to go anywhere,” the mother said.