‘Prepare for a marathon’: Little Orlando battles rare condition
Normal is not a word Orlando Gulizia’s family knows.
Their life has never been normal, and probably never will be.
In the last three years their life has consisted of doctors rooms, hospital beds, surgery, scans, and watching their youngest child – the cheeky one – deteriorate before their eyes.
“Prepare for a marathon, not a sprint,” was how it was put to parents Anna Surace and John Gulizia.
Orlando, 3, has a rare sub-form of paediatric brain cancer which to this day has not been diagnosed.
And although he has now been in remission for a year, the reality of that diagnosis – or lack thereof – meant Orlando was a regular at the Royal Children’s Hospital from the time he was 17-months-old.
The youngster had started to have absentee seizures and one day his parents couldn’t bring him out of the trance, prompting a trip to the emergency department and scans which revealed he had a 10mm growth on his brain.
“They advised us that it’s quite common for children to have abnormal growths in their brain which can cause seizures. With regular monitoring and medication they go on to live a normal life,” Mr Gulizia said.
So home again the family went, under the premise they would be back in a few months for an MRI and check-up.
But when the MRI came around, their world was shattered.
“I knew that there was something wrong,” Ms Surace said.
“I just knew that there was something wrong.”
“The surgeon said to us unfortunately there is a tumour that has grown in his head – it’s about the size of a peach – and he is going to need immediate surgery to try and remove it.
“I was in shock.”
Mr Gulizia said his “blood ran cold.”
Orlando and his family, including his two older sisters, barely had a minute to think before they were kissing him goodbye as he went in for a nine-hour surgery to remove the growth.
He was left in the steady hands of Alison Wray, one of the hospital’s best surgeons, who said she would do everything she could to remove the tumour and give the toddler the best shot at life.
The surgery was a success – but what the family didn’t realise was that because Orlando’s tumour was considered highly malignant and dangerous, he would also have to endure high-dose chemotherapy and then radiotherapy.
A year on Orlando is full of beans.
He loves everything Cars and ravishes the chance to play outside – rain, hail or shine.
And although the family still have a long way to go, Orlando’s positivity and charisma give them hope.
The family hopes that by sharing their story more people will be inspired to help kids like Orlando, through the Good Friday Appeal and by raising awareness for childhood cancer.
Originally published in the Herald Sun, April 10, 2020
Words: Alanah Frost
Images: Alex Coppel