Why this terminally-ill boy can’t have his wish granted
ALL Phoenix Smith wants to do is jump from the pages of a comic book and into real life just like the characters he looks up to.
Phoenix was earlier this year granted his wish to be a superhero and save the day thanks to Make a Wish Australia.
The 10-year-old Tweed boy has a fatal rare disease that attacks his brain and causes developmental delays, deafness and blindness.
Unfortunately, Phoenix's dream has been postponed due the COVID-19 pandemic and the Queensland border closure.
His mother, Faune Meise, desperately hopes there will be a further lift in restrictions and the border reopened soon as her son's health is deteriorating.
"His vision is getting quite bad, it's like tunnel vision. I've noticed in the past six months he is holding things up close to his face," Ms Meise said.
"I want him to enjoy his wish while he can still see."
Ms Meise said Phoenix's wish was to be Hulk and work with Spiderman and Iron Man - whose dog was kidnapped by the evil Thanos, a villain from the Avengers series.
She said Make a Wish Australia volunteers had almost finished planning the adventure when the pandemic hit.
"I believe the wish was going to happen in Brisbane but the exact place was not yet down pat.
"They were finalising those details when COVID came and we had to postpone it because we can't cross the border and have to keep everyone safe and healthy."
Phoenix was diagnosed with infantile refsum disease in 2012 when he was just two-and-a-half.
Ms Meise explained the rare disorder allowed toxins to build up in Phoenix's body and those toxins slowly destroyed the brain.
She said Phoenix is one of 12 children in Australia with the fatal disease and was only one of six when he was first diagnosed.
"Because it's a fatal disease, it's like grieving a child who's still here.
"Knowing he's not going to have a future like his siblings and friends and he tells me, 'I want this car when I'm older', and, 'I can't wait to be a dad', my heart breaks because I know he won't have that.
"He is a light for me. He will give you the shirt off his back and include everyone.
"His wish is all of his loves, he loves to feel needed and wanted and loves dogs. It will be a beautiful adventure."