At the start of 2024, the Di Giglio family received earth-shattering news: their two-year-old daughter had a brain tumour.
Florence has a genetic disorder called Neurofibromatosis type 1 (NF1), which didn’t rear its head until just before her third birthday.
As Florence’s health battles continue, the family have launched the Florence Foundation in an effort to help other families in similar situations.
It will hold a fundraiser next month to kick-off support for Red Kite and the Cancer Council.
The Di Giglio family know the enormous impact the devastating news of a cancer diagnosis can have. They remember vididly how it all started with Florence.
“She showed some strange signs of not being able to walk and seemed wobbly,” said her mother, Amanda.
“We were concerned, and we couldn’t figure out what was happening. We kept taking her back to the GP and it just wasn’t clear what was going on.”
The family were referred to specialists, but long waiting lists and the Christmas period prolonged the investigation process, forcing the Di Giglio’s to go to the emergency department.
“Within a couple of days, we had an MRI, and they found a brain tumour,” Amanda recounted.
“It was the size of a small avocado seed or a large walnut and they said it was blocking the fluid from flowing through her brain and spine, which was causing the neurological problems.
“They had to do surgery within a few days to try to reduce the size, but they couldn’t remove it fully.”
That was the beginning of Florence’s journey with NF1, which has come with complications.
“She had a bleed on the brain during surgery which caused complete left-side weakness,” the Mulgoa mother explained.
“At first, she couldn’t move her left side, but then she slowly began regaining strength.
“She had her 3rd birthday in ICU and had to learn to eat, talk, walk, and move her left arm – she had to learn everything again.”
Florence was on chemotherapy for about six weeks, but it affected her badly and she has switched to another treatment, called an MEK inhibitor.
Despite all the setbacks in her short life, Florence has been described as a superstar.
“She’s charismatic, happy, intelligent – she’s the warmest little girl and she’s very funny, just like her dad,” Amanda described, referring to husband, Chris.
While Florence is improving, Amanda and Chris have launched the Florence Foundation to help other families in the same situation.
They have organised a fundraiser on June 7 at Mulgoa Preschool to raise money for Red Kite and the Cancer Council.
“We’ve got Burger Head, Brisket Boys burgers, unicorn ponies for kids to pat and feed, and a raffle with the first prize being a family holiday to Bali,” Amanda said.
That’s just a snapshot of the fun on offer at the school fete, and the beginning of the Florence Foundation’s philanthropic work.
If you want to get involved, you can make a donation online at https://bit.ly/florence-found.
Ally Hall
Ally Hall joined the Weekender in 2024, and focuses on entertainment and community stories. She's a graduate of the University of South Australia and has previously worked as a Video Journalist with Southern Cross Austereo and as a News Reader with Australian Radio Network.