Ethan Pusey doesn’t look much like your everyday superhero.
But what the five-year-old Mandurah boy lacks in height and muscles is more than made up for with his bravery.
One of just 41 people in the world – and the only person in Australia – to have ciliary body medulloeptheliama, Ethan finds it hard to pronounce his condition.
He knows what he has, though. He has cancer.
Ethan started life as a healthy baby in 2011.
Hitting all his milestones, there was little for his parents Robert and Tianna to worry about.
A puffy eye when Ethan was 16 months old was the first sign something was not right.
A subsequent series of cysts were removed, but the constant pain and another cyst growing on Ethan’s optic nerve, meant the little boy lost his left eye earlier this year.
It was while he was recovering from this operation that Ethan’s family was given the news every parent dreads – their son had cancer. And it was aggressive.
With the prognosis for Ethan’s condition considered “dismal”, with median survival for sufferers put at about five months from diagnosis, his family has sprung into action.
Determined to make what could possibly be Ethan’s final birthday memorable, they have launched a Go Fund Me site to raise money to take the superhero fan – and his brother and sister – to Movie World on the Gold Coast.
“He has been really, really brave through all this,” Ethan’s mother said.
“He’s been in a lot of pain, and it’s broken my heart several times.”
Ethan said he wanted to go to Queensland to see the Marvel character superheros, “because they fight”.
“I’m like the Hulk,” he said.
“I’m a fighter.”
Community support has already seen the family’s fundraising target met.
Funds raised beyond their target are expected to go towards covering Ethan’s medical costs.