By Melissa Grant
Geelong boy Gus Graham is mad for motocross.
But his days of racing ended unexpectedly in February last year when he was diagnosed with a Wilson’s Disease, a rare genetic condition.
If you saw Gus in the street, you wouldn’t know he was ill. And his mother, Lisa, often has to be reminded that her 11-year-old boy is incredibly sick.
The devastating diagnosis came without warning. Gus had a sore belly and jaundice of the eyes in the days before he was hospitalised.
His illness puzzled doctors at the Royal Darwin Hospital, a fair drive from the rural Darwin property where the Graham family then resided.
“We did a week in Darwin (hospital) where they were running every test under the sun,” Lisa recalled.
“They had to rule out I wasn’t drugging or poisoning him in some way.
“They ran all the tests – we had MRI, CT scans, bloods.”
Gus was then flown to the Women and Children’s Hospital in Adelaide, where he underwent more tests. After four weeks he was diagnosed with Wilson’s Disease and a number of other conditions, including chronic liver failure and adrenal failure.
Wilson’s Disease is a rare genetic condition in which the body retains excess copper.
The build-up of copper can lead to damage in the kidneys, brain, nervous system and eyes.
Without medical treatment, the disease can result in serious complications including liver disease, muscle atrophy, permanent disabilities and even death.
While Wilson’s Disease can’t be cured, it can be managed.
The condition leaves Gus feeling fatigued and his memory, particularly short-term one, isn’t great.
He also has to follow a strict diet and isn’t allowed to race his motorbike any more.
Last December, the Graham family relocated to Geelong, where Lisa grew up, to be closer to family and medical care for Gus.
It’s been a tough time for Gus and his family. But through it all, Gus and his parents have had the Starlight Foundation.
Gus’s Starlight experience started in Darwin where he often saw Captain Starlight walking around the children’s ward.
“They would walk around, play their ukulele and tell fart jokes,” Lisa said.
“It was all the little games between the captains and the kids that keep the kids smiling. It takes their mind off what they are there for.”
When Gus was at Adelaide’s Women and Children’s Hospital, a nurse suggested Lisa apply for a Starlight Wish.
However, Lisa thought Gus wasn’t ill enough to qualify.
“She said to me ‘Lisa, Gus is really sick’,” Lisa recalled.
A couple of months later, Gus was advised that the Starlight Foundation would grant him a wish.
He asked to go the Supercross Aus-X Open final in Melbourne where he hoped to meet some of the riders.
Not only did Gus get to meet his heroes Chad Reed and Ricky Charmichael – he also got to go for a ride with Chad Reed around the track.
And he got to take home a Chad Reed jersey.
The Starlight Foundation took care of everything: the flights, accommodation, hire car and the incredible supercross experience.
“They went over and beyond,” Lisa said.
“Gus actually cried when he first found out he was going on the bike with Chad Reed and the smile on his face was huge – you couldn’t wipe it off.”
Afterwards, Gus only had one small complaint – his face was sore because he had been smiling so much!
Lisa has shared Gus’s story to highlight the incredible work of the foundation.
“To anybody looking for a tax deductible donation, please dig deep to help the foundation put smiles on children’s faces,” Lisa said.
Starlight needs to raise $1.3 million to bring happiness to more than 30,000 sick kids in hospital and in the community this Christmas. Visit https://www.starlight.org.au/christmas to donate.