THREE-YEAR-OLD Lilly Antonelli, of Redland Bay, has gone through 14 operations since being diagnosed with a chronic brain disease in October last year.
Lilly returned home from Sydney this week after another round of surgeries.
She has chiari malformation, a disorder that is rare, especially in children, and very difficult to diagnose.
It occurs when part of the brain descends out of the skull into the spinal area, which results in compression of parts of the brain and spinal cord.
This disrupts the flow of fluid around the brain.
Lilly also has a linked condition, syringomyelia, which is a cyst along the spinal cord.
Her kindergarten, Grasshoppers Early Learning Centre in Redland Bay, held a minion fun day on Thursday to raise funds to help the Antonelli family.
Family and friends in Australia and the United Kingdom, together with the kindergarten are selling wristbands to help with the cost of Lilly’s rehabilitation.
A GoFundMe page has also been set up.
Lilly’s mum Michaela Antonelli said she was overwhelmed by the support, especially as local shops have started to sell the wristbands.
“We were in Sydney at the airport and there was this guy who got off the plane wearing one of Lilly’s wristbands,” she said.
“It is amazing that people have gone out of their way to do this for Lilly. Without a doubt she deserves it.
“For a young family with a mortgage to pay, it means we have money to pay for rehab for Lilly and to provide the best possible care for her,” she said.
After Lilly’s diagnosis in October, part of her skull was removed during her first surgery. This was followed by the insertion of a shunt to drain the fluid around the brain.
Ms Antonelli said she invoked Ryan’s Rule in January when she thought Lilly’s condition was deteriorating and that she needed a decompression to relieve the pressure on the brain.
About two months ago, Ms Antonelli found a medical specialist in Sydney who deals with Lilly’s conditions and offered his services free.
Lilly went through a seven-hour operation, which included having a titanium plate inserted in the back of her head.
Doctors are monitoring the size of the cyst in Lilly’s spine and she will need to return to Sydney in about two months.
In the meantime, the three-year-old is still in chronic pain and has complications including nausea from the medication.
She will need physiotherapy, early childhood development assistance and support from a dietitian, among other rehabilitation.
There is also a Facebook group called ‘Lilly’s Wrist Band Selfies!’ to support the Antonelli family.
