Gus in his motorbike gearAll the fun of off-road motocross came to a sudden halt for quiet and selfless ten-year-old Gus when doctors diagnosed him with Wilson's Disease in 2019.

The rare genetic condition has led to chronic liver failure, unstable blood glucose levels, and low-bone density.

As a result, Gus' day-to-day activities are now very different to what they were only six months ago. He can no longer ride his beloved motorbike or play contact sports, and is often too unwell to go to school.

Mum Lisa said the diagnosis was overwhelming as Gus had just been feeling a bit off colour.

"Gus was lethargic, off his food, had abdominal pain and yellowing of the eyes," she said. "Sadly, we discovered these were all symptoms of Wilson's Disease."

Following his diagnosis, Gus spent four weeks in the Women and Children's Hospital in Adelaide and is now a regular patient at Royal Darwin Hospital.

Gus in hospital bedLisa said the family's routine has changed dramatically since the diagnosis. She's not working as Gus can be admitted to hospital at any time and dad Trevor is juggling work commitments to be at home with the family as much as possible.

The disease leaves Gus exhausted.  He has to fast for four hours each day for his medication and follow a strict low copper diet.

"We have to be more prepared when leaving the house with supplies of food, water and medications including two different needles. Gus is always tired, so managing what we do and when, has become a challenge as he isn't able to do as much as he used to do," Lisa said.

Thankfully, amid all the pain and sadness of hospital and treatment, Gus and his parents have Starlight's hospital services.

Gus never misses a chance to visit the Starlight Express Room when he's in the Royal Darwin Hospital. He looks forward to the moment the room opens each day and being able to play games and be entertained by Captain Starlight

Gus with Captain Starlight

And when he's transferred back to the Women & Children's Hospital in Adelaide for treatment, he's happy to know the Captains are there too!

Laughing and having fun helps Gus forget about his illness, treatment and medication. Each time he's admitted to hospital, he counts down until the Starlight Express Room doors open!

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The way Gus comes out of the Starlight Express Room when he's in hospital is amazing. Seeing my son smile like that makes my heart sing. The Captain Starlights do everything in their magical powers to bring sparkle to his day.
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Gus' mum, Lisa

The Starlight Express Room also gives Lisa a bit of time for a quiet coffee to help recharge her batteries.

Gus playing with Captain StarlightAnd when Gus is confined to his hospital room, the fun comes to him. The Captains visit him with jokes and games helping to break up the boredom and loneliness of his long days in hospital.

The excitement and anticipation of Captain Starlight's visit is a great distraction from all he's going through.

"Gus loves those visits because they always make him laugh. He looks forward to hearing the Captains on the wards knowing they will be with him soon."

Lisa said the difference Starlight makes goes beyond the smile on Gus' face.

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Starlight dramatically helps with kids' mental health and putting them in a good mood to tackle whatever they have to face in hospital. Not having Starlight would be debilitating on Gus' mental health.
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Gus' mum, Lisa

And to Starlight supporters she said, "Thank you from the bottom of our hearts. Without people like you our hospital stays would not be bearable. Thank you for everything you do and all you donate for the future of all sick kids and their families."

Gus and family

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
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