Brady loves a good sports chat - especially about the AFL and Cricket’s Big Bash League. He’s the youngest of three boys and is a huge sports fan.
At 13, despite the complex health challenges he faces, Brady is an outgoing kid and has shown determination and resilience beyond his years.
“Brady wants to stop and chat to everyone he meets. He didn't speak for the first four years of his life, so we often joke that he’s making up for lost time,” his Alicia mum said.
After a difficult pregnancy, Brady was born by emergency caesarian at 36 weeks.
From the moment he was born, doctors were concerned so Brady underwent a series of tests which revealed he had Cerebral Palsy.
“We were told soon after Brady was born that he would possibly never be able to walk or talk,” Alicia said.
The family faced further anguish when Brady was later diagnosed with Moebius Syndrome -a rare neurological disorder characterised by facial paralysis and impaired eye movement.
Brady lives with mobility issues, is blind in his left eye and has limited vision in his right.
So much of Brady’s childhood has been filled with medical treatment and ongoing hospital stays. He’s had multiple eye and leg surgeries and countless rounds of Botox in his legs as well as physio, OT and speech therapy. He sees several different clinics at the hospital and has undergone genetic testing, multiple MRIs and scans.
“As parents, it’s so hard watching Brady in so much pain from his surgeries,” his mum said.
“Brady loves coming to hospital because of the Starlight Express Room. When he was younger, he’d cheer with excitement as soon as the hospital came into view.”
While recovering from major leg surgery a few years ago, the Starlight Express Room gave Brady a place to take a break, play games and just be a kid.
“It was the first time I'd seen him smile in days. The Captain Starlights completely took his mind off his pain and also gave me a chance for a little bit of a breather during a stressful few days,” Alicia said.
When Brady is too unwell to leave his hospital bed, he enjoys playing Bingo and joins in the quizzes with Captain Starlight on Starlight TV.
Alicia says that happiness is so important to kids facing long, hard days in hospital. “Laughing and having fun has a huge benefit – it’s time out of the hospital room, a distraction from the pain and something to look forward to.”
Brady needs support with all aspects of daily life, and this has impacted Alicia’s ability to work full-time.
“Having a child with a disability has changed our family's life greatly. Wherever we go we need to think about accessibility; it’s opened our eyes to how inaccessible the world can be.”
Brady was six when he took his first few steps independently which Alicia said was an amazing moment “and something that we didn't think was possible.”
As well as the physical toll, Brady’s condition impacts him emotionally too.
“Brady tries so hard to physically keep up with his peers which is difficult - he desperately wants to run around with them in the playground but has never been able to keep up. This affected his ability to make friendships in his primary school years,” Alicia said.
She goes on to describe how the family also has to deal with strangers staring and commenting on her son when they’re out in public.
“As he gets older, he often overhears comments made about him while we’re out and this is the hardest part emotionally. We wish people would come and say hello, then they’d see that although Brady looks different, he’s just the same as us all.”
Brady's treatment is ongoing and he’ll need different therapies and surgeries for life. He’s currently working hard on getting his walking and endurance back on track after major leg surgery.
The family is so thankful for the difference Starlight makes to every hospital visit.
“Without Starlight in hospital, there would be no light at the end of the tunnel during painful procedures and the many appointments. The Starlight Express Room is Brady's light for getting through the difficult, painful stuff he has to endure. Starlight has turned what could be a negative experience into a positive, enjoyable one for us.”
