Gus

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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 ten 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

Gus playing with Captain StarlightThe Starlight Express Room also gives Lisa a bit of time for a quiet coffee to help recharge her batteries.

And 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.

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

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."

Thanks to those supporters, there’s excitement in Gus' near future as he's just been granted his Starlight Wish!

His wish is to attend the final of the Supercross Aus-X Open in Melbourne, and to hopefully meet some of the riders.

As soon as Gus started thinking about his wish, his mum said Supercross was always going to be number one!

"Super bikes have always been his passion and he was devastated when doctors told him he wasn't able to ride anymore, so his wish will be a dream come true after all he’s been through."

Gus is busy planning his trip to Melbourne and is following all the latest Supercross action online. As part of his wish, Gus also received a surprise Yamaha jacket, t-shirt, cap and sunglasses to wear at the big event.

Lisa said Gus' wish has given him an incredible boost.

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The anticipation and excitement is giving Gus something to look forward to which is helping his daily wellbeing. It's going to mean the world to all of us. Money has been really tight since Gus was diagnosed, so being able to go and experience this amazing event as a family will be awesome.
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Gus' mum, Lisa

Stay tuned for all the monster race action, plus a few more surprises coming Gus' way too!
 

Gus and family

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