If you passed Simon Bazouni on the street, you would think he’s no different to any other kid – he loves the Parramatta Eels, playing with his brother, and food.
However, Simon has Cystic Fibrosis (CF) – a genetic disorder that impacts his lungs and digestive system.
“It came as a shock,” said Simon’s mother, Teresa Bazouni.
“Simon was a late diagnosis. He was diagnosed at 17-months-old and normally CF gets picked up when you’re born, but because Simon carries a rare genetic mutation it was never picked up.”
The diagnosis hit the family hard in the beginning.
“Every day is tough, but we’ve learnt that our faith, hope and belief is the foundation of our strength. He’s a very resilient, tough young boy,” Teresa described.
The life expectancy for someone with CF has risen to 56 years due to medical advancements and new therapies, including a drug called Trikafta.
“It’s great for the CF community, it’s changed their world and we’re so happy for those that can take it. Any treatment, any drug is life changing,” said the Merrylands mother.
“Unfortunately for Simon, because he carries a rare genetic mutation, this doesn’t fit his criteria.”
That’s why the Bazouni family has partnered with Cure4CF – a charity that has declared war on the disease.
“For us, research is more than just science. With research, we see the endless possibilities that come with it,” Teresa stated.
“It’s the reason Simon dreams bigger. It gives him the belief that there’s a better tomorrow – and it’s not just for Simon, it’s for everyone else living with this condition.”
Teresa admitted she didn’t know about CF until after her son was diagnosed, and although exposure is improving, it’s important to make the most of Cystic Fibrosis Awareness Month.
“CF is hard to sell. It’s an invisible disease, and while people look well on the outside, everything’s happening on the inside,” Teresa explained.
“CF Month is an eye-opener. People get to see it from our perspective. There’s a lot that goes on behind the scenes that nobody knows about.”
The family raise awareness and share their story through the Team Simon Foundation and hold an annual fundraising event.
“We’ve got a gala dinner on the 30th of May, and all money raised on the night goes to research,” Teresa said.
“We started doing annual galas in 2022 and to date we’ve raised just under $1.7 million. We’re hoping to reach $2 million this year.”
The event will include raffle tickets, a silent auction, a live auction, entertainment, a meal, a toast, and the magic of human connection to find a cure. Find out more about Simon’s story and the gala event online at https://teamsimon.com.au/.
Ally Hall joined the team 2024, and focuses on entertainment and community stories. She is a graduate of the University of South Australia.