At 17, super Mario fan Jacob has overcome more obstacles in his life than many of us could imagine. His positivity, bravery and resilience inspires everyone he meets. It’s no coincidence his favourite band is Jack Black’s Tenacious D!
His close-knit family of four shares a love of gaming.
“We're basically a massive family of nerds” laughs mum Kylie. “We love Lord of the Rings, The Hobbit, Mario Kart and Smash Bros. Jacob’s favourites have always been the Mario games.”
This shared passion has helped keep the family connected and brought joy and distraction over the years of being torn apart by hospital and treatment.
Jacob was born with Goldenhar syndrome – a rare condition that affects the development of the eyes, ears and spine. The disease can also affect the heart, lungs, kidneys, and central nervous system.
Kylie recalls the shock and sadness for her and dad Aaron learning of the complex health issues their newborn baby was facing. Jacob was born prematurely and was immediately “whisked away” for tests.
“It was an incredibly tough time; we were in shock not knowing what lay ahead.”
Jacob was born without the left side of his jaw or his left ear. He had vision and hearing impairment and doctors discovered four holes in his heart. Jacob was rushed to the children’s hospital and admitted into the neonatal intensive care unit.
“I look back and it's just a blur. But we didn't know any different as he was our firstborn. He was our baby and we were just doing what we had to do in that moment,” Kylie said.
Those early years were marked by never ending rounds of surgery and specialist appointments- sometimes five days a week. Jacob had a nasal gastric tube and then he had to have a gastrostomy button in his stomach.
The financial and emotional strain was immense. When Jacob’s little sister Jasmine was born, mum said she was ‘dragged along to every appointment too.’
In total, Jacob has endured 16 surgeries, spending weeks on end in hospital just about every year of his life.
Jacob has compromised airways (known as a grade four airway) so his surgeries carry bigger risks and often last often longer than normal.
“Every surgery Jacob has is scary. There were times when we were told the chances of him coming out would be touch and go,” Kylie said.
While a resilient kid, Jacob has had moments over the years where he’d say to his Mum, ‘I wish I was like other kids. Mum, why am I like this?’
“It’s been uphill for him right from the start, but he’s been so happy and brave. He's an inspiration to us.”
Throughout the family’s journey Starlight has been there helping to make hospital a much brighter place for Jacob. Kylie fondly remembers the first time they discovered the Starlight Express Room- ‘we thought what an awesome place.’
Having the fun and distraction of the Starlight Express Room helps take the stress and worry away.
“I'm going to be honest, Jacob loves coming to the children’s hospital because he loves Starlight,” Kylie said. “He never complains about having to come to hospital; he just does what he has to do- whether it's a surgery or an appointment because it means at the end of the day he gets to spend time with the Captain Starlights in the Starlight Express Room and that makes him happy.”
The Captain Starlights always visit Jacob in his hospital room after his surgeries and play jokes with him and make him laugh. Kylie said Jacob loves playing pranks with them in the Starlight Express Room. And of course, the loves gaming in there too and any opportunity to play Mario!
“For Jacob, the best part of the Starlight Express Room is the silly conversations he gets to have with the Captains. It's just so much the fun for him. He could just sit and have those conversations with them for ages. Without Starlight, it would be miserable for him.”
Kylie said Starlight has made a big difference to Jacob’s hospital experience by giving him a break and an outlet to have fun.
Recently Jacob had a life-long dream come true when he was granted his Starlight Wish.
His Starlight Wish was to go to the premiere of the Super Mario Brothers movie. It also came with special surprise from non-other than Hollywood actor Jack Black.
“Jacob’s favourite Mario character is Bowser and he loves Jack Black, so when he found out Jack Black was playing Bowser, his mind was blown. He was like, Mum, I have to see that movie for my Starlight Wish.”
The family were flown to Melbourne for the red-carpet treatment complete with a Bowser costume for Jacob and a ride in a limo to the premiere event.
In the lead up to his wish, Jacob was so excited and talked about it all the time. Jacob was in for more excitement with a surprise personalised video message from his hero Jack Black!
“It was mind blowing! I had to watch it 20 times before I was like, Holy moly, Jack Black's actually sent me a video message!” Jacob said.
The family enjoyed an unforgettable, fun-filled time together away from the stress and worry of hospital and Jacob still loves wearing his Bowser costume!
Jacob said, “If I could relive my Wish, I'd do it over and over again, It was the best day ever. Thank you very much.”
Jacob’s Starlight Wish created memories the family will remember forever.
“Our Starlight Wish made us all so happy and it was an amazing break for Jacob. This was something special just for him; doing the things he loves doing with the people he loves. We will be forever grateful. A massive to thank you to everyone who made this possible for our family.”
