One of six kids in the family, Zackary (Zack) loves to be the star of the show! The bubby six-year-old has his adoring siblings wrapped around his little finger!
Despite all the pain and trauma, he endures, Zack always has a smile.
Zack's medical issues began before he was born when doctors diagnosed the rare genetic disorder Treacher Collins syndrome.
Mum Sarah was told her baby boy would experience extreme breathing difficulties at birth and may need emergency surgery.
A team of around 30 doctors at the Women's and Children's Hospital in Adelaide performed a complex operation to support Zack's breathing at birth and he was immediately intubated and incubated in PICU (Pediatric Intensive Care Unit).
Zack remained in hospital for the first five months of his life.
Sarah said it was a rollercoaster of emotions as she watched her 'little fighter' defy the medical odds.
"I knew he would pull through and that no matter what, we'd there for him 100%," she said.
It was during those agonising long months in hospital that the family discovered Starlight.
Zack's siblings loved spending time together in the Starlight Express Room.
"It was winter and cold outside, so it was such a relief for me to know our other kids had somewhere happy and warm indoors they could be together whenever they came to see Zack in hospital," Sarah said.
Treacher Collins syndrome prevents the skull, cheek and jawbones from developing properly. In Zack's case, his facial features are affected, he has a full cleft palate and it’s hard for him to breathe, speak and eat. He has hearing loss due to microtia and atresia, which means he has no ears.
"Intellectually, he's not affected," his mum says. "He's very outgoing, loves life and takes everything in his stride."
Zack's ongoing medical care is complex and exhausting. He sees a range of specialists in hospital for ongoing check-ups, tests and operations.
He was in hospital for months last year following jaw distraction surgery to open his airways. Ultimately, the painful procedure managed to bring Zack's lower jaw forward to a point where he could breathe on his own without a breathing tube.
Thankfully, whenever Zack's in hospital he can take a break from all his gruelling treatment and have fun with Captain Starlight in the Starlight Express Room.
It's a great distraction and has stopped Zack fearing hospital as a scary place. Starlight takes away his pain and fear which totally changes the dynamics of being in hospital.Zack's mum, Sarah
In the Starlight Express Room Zack loves drawing, playing Minecraft and challenging Captain Starlight to Mario Kart. Spending time with his siblings in the Starlight Express Room helps keep the family connected.
Sarah said, "Our life has changed for the better - my other children are so compassionate and kind-hearted and have a much deeper understanding for differences and disabilities after spending so much time in hospital with Zack."
She laughs as she says the Starlight Express Room is not just for kids! "When I'm in there I often play with the craft with the girls and play Mario Kart with Zack! Without Captain Starlight or the Starlight Express Room, hospital wouldn't be a happy place for any of us."
When Zack is confined to his hospital bed, Captain Starlight brings the fun to him on the ward with craft, games and his favourite balloon animals. Zack is also a master at the afternoon quiz on Starlight TV.
Starlight has helped the family create shared happy memories during years of so much sadness.
There was great excitement as the family headed to Starlight's annual Wish Week on the Good Coast to enjoy a fun-filled break away from hospital. It was a dream come true as Zack got to meet his favourite character SpongeBob SquarePants and he loved sharing this experience with his family.
Sarah said she can't imagine how Zack would cope without the joy and happiness that Starlight brings.
She is so thankful to supporters who help keep Starlight's services open in hospital.
If only they could see the smile on Zack's face. He's been through so much pain and trauma and Captain Starlight and the Starlight Express Room still make him smile. Nothing else in hospital can do that for him except for Starlight. We are so grateful for Starlight.Zack's mum, Sarah
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