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Thursday, May 22, 2025
ALLY HALL
The Voice of Penrith
westernweekender.com.au
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The Di Giglio family.
A
t 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. Story continues on » p. 19
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