If you think Marvel’s Thor is strong, wait ‘til you meet 14-year-old Amon.
Despite living with multiple complex health issues, Amon is an unstoppable force who has defied the odds.
“Amon was given no chance of surviving pregnancy, his mum Melinda said. “His organs and some limbs were deformed. His kidneys were growing rapidly and became seven times the normal size."
Yet Amon was born, and he showed no signs of giving up. The doctors did not know what they were facing but were sure that Amon's kidneys would fail. Heartbreakingly, doctors told Amon's parents to prepare for the worst and advised them to take him home and simply love him for the short time he had.
Hours before discharge, Amon stopped feeding and became ill. Doctors discovered a blocked bowel, and he was rushed to surgery to save his life. However, there were complications as Amon's lung was punctured during surgery which meant he now had added struggle to breathe and overcome enormous pain.
Again, little Amon’s strength and determination shone through. He showed courage and chose to fight on and live.
Later, Amon was diagnosed with Trisomy 12p syndrome (an extremely rare genetic condition), poly-cystic kidney disease, limb deformities, scoliosis and deafness. He often developed infections that saw critical organs struggling. He would be bedridden, in pain and extremely weak.
Melinda said their lives have been consumed by emergency visits, hospital stays and many surgical procedures that impact on the whole family. Amon is one of four boys - older brother Isaac and younger brothers Riley and Reuben. They are extremely close but are often separated.
“It’s hard. Amon misses out on doing life with them,” his mum says.
With so much time in hospital, it can also be hard for Amon to keep up with his peers as he misses a lot of school. The Starlight Express Room has helped Amon to meet other kids while in hospital.
“It’s a beautiful thing for the kids to connect with others,” Melinda said. “There’s not a lot of laughter when you’re sick but having Starlight there helps.”
"We are thankful to have the Starlight Express Room and all their fun activities. You can switch off for a moment and forget the illness."
Melinda calls Amon their ‘little superhero’ because he is brave and never gives up. "Amon’s strength and his tolerance for pain is inspiring,” she said.
So, it comes as no surprise that Amon has a love of superheros. In particular, he is a BIG Marvel fan and absolutely loves Thor.
Amon has always been inspired by Thor’s strength, superpowers and courage, so when he was granted a Starlight Wish, he knew he wanted to meet the ‘real life Thor’ - AKA Aussie actor Chris Hemsworth.
Amon is also interested in theatre, acting and movie making and was keen to hear about Chris’ professional experience.
For his Starlight Wish, Amon and his family spent an unforgettable day hanging out with Chris in Byron Bay. Amon even got to hold Thor’s famous Hammer - the legendary Mjolnir and swing his mystical axe Stormbreaker!
Melinda said the whole community shared in the excitement of Amon’s Starlight Wish.
“Amon’s wish not only brought joy to our family, but to the boys’ schools' and many in the wider community. People were so excited to hear the story and meet Amon. The happiness and magic of our Starlight Wish spread beyond us. It was amazing.”
Meeting his superhero gave Amon the opportunity to shine and share something positive with his family after over a decade of illness, pain and hospital.
Melinda said, “Our Starlight Wish became something that words will never capture. It was truly something special.”
