Phoenix rising to Hulk challenge
Kind-hearted Phoenix's wish it to turn into The Hulk and save the day. This is his story.
Wish is Waiting
Wish mum Faune gets little reminders now and then about her son Phoenix's health journey.
Not long ago, she was flicking through family albums with her oldest child Nate, when they found old photos of Phoenix. He had just had cochlear implants, and his ears were bandaged.
"Nate, who is 12, started crying and said 'it's just hit me now mum how much things have changed for Phoenix, and what he won't have'," Faune said.
“His illness has started to impact the whole family."
Pheonix had just turned two when doctors began investigating why his hearing was deteriorating. Shortly after, they confirmed Phoenix had a metabolic disorder: infantile refsum disease, a genetic disorder that damages the brain and affects motor movements.
Initially, Faune felt optimistic about Phoenix's diagnosis, believing medical advice a strict diet could manage his condition.
"We were quite happy with that. Then they took us into this room, and there were six doctors, and I thought, 'why are there so many doctors?' and I just had this horrible feeling in my stomach," she said.
"They said it wasn't something that could be treated by diet and that other children with his disease don't live past 20."
Faune said the news her beautiful little boy did not have a positive future was "gut-wrenching."
"I think for me, it was a sense of loss of what his future would be," she said.
"They said he would never read or write and will end up in a wheelchair in the last few years of his life."
Fast forward to 2020, and Phoenix is 10 years old and exceeding expectations.
"He has low muscle tone, brittle bones. Cognitively even though he's 10, he's probably a 5-year-old mentally, but he can add numbers, and he can write," Faune said.
"We still don't know what his future will hold. And his vision is deteriorating faster than we would like, but everything else seems stable, which is amazing."
To have an adventure with superheroes.Phoenix, 10 infantile refsum disease
Resilient boy always thinks of others
Phoenix is the boy with a heart of gold. If he has more than one thing and someone else has nothing, he'll share.
If he is playing and someone isn't, he will immediately ask them to join him.
"He's so happy," proud mum Fuane said. "He's very funny. He is very into imaginative play; he loves to pretend to be a dinosaur or whatever.
"He is incredibly kind to others. And very inclusive. He is a social butterfly; he gets on with everyone."
Faune said Phoenix has always been resilient.
"Anything he can't do with the support of other people, we find ways around it, and he often finds out his own way of doing it," she said.
The Hulk to save Iron Man's dog
Little many other wish kids, Phoenix has a desire to be a superhero.
Phoenix has "got a million" superhero toys, costumes and every other piece of merchandise available.
Faune said a close second to his love of The Hulk, Iron Man and Superman, was Phoenix's love of dogs.
So for his wish, the Make-A-Wish team had to come up with something incorporating both pooches and superheroes. And, together with Faune, they did.
"He will be The Hulk, and the idea is he will be saving Iron Man's dog which has been stolen," Faune said.
Unfortunately, due to COVID-19, Phoenix's wish has been delayed. But Faune said they understood the need to postpone.
"I told him all the superheroes are sick, but when they get better, his wish will happen," she said.
"I smile just thinking about how much he's going to love it.
"He hasn't had anything to look forward to, and I don't want to cry but he doesn't have many proper friends, and he doesn't get invited to anything. To have a day just for him is going to mean absolutely everything to him.
"He is going to be so excited; he is going to be screaming."
And what about superhero training so Phoenix is ready to become The Hulk?
"Nah, he's got it down pat," Faune laughed. "He jumps off the couch and does a big 'Hulk smash'. There's no training needed!"
Just talking about the wish, I feel teary. I am just so appreciative of everyone involved and Make-A-Wish, and I am really excited for him. It will be nice to create those memories with him and his brothers.Faune Phoenix's mum
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The Wish Journey
How a wish comes to life
Make-A-Wish volunteers visit each child to capture their greatest wish, getting to the heart of what kids truly want and why. This profound insight is part of what makes Make-A-Wish unique, giving children full creative control and helping to shape their entire Wish Journey.
Back at Make-A-Wish HQ, we partner with families, volunteers and medical teams to design the ultimate wish experience - and start rallying our partners and supporters to help make it happen.
In the lead up to the wish, we take each child on a journey designed to build excitement and provide a welcome distraction from medical treatment. Anticipation can be incredibly powerful, helping to calm, distract and inspire sick kids at a time they need it most.
When the moment finally arrives, children get to experience their greatest wish come true - it's everything they've imagined and more. Pinch yourself, and don't forget to take a breath and enjoy every precious moment!
Wish impact studies show that a child's wish lives on, long after the moment. A wish gives more than just hope – with an incredible and lasting effect on the lives of sick kids, their families and wider communities.