Source : Perth Now news
Meet Aiden Narsico — the life of the party.
At nine years of age, the pint-sized powerhouse is loud, energetic, endlessly confident and, if you ask him, destined for the big screen.
Just last week Aiden found out the spotlight he has always dreamt of is finally going to be his when he became a Little Telethon Star.
He was given the news in front of his school during footy practice and one thing’s for sure — there was no modest celebration or shy smile.
There was running, jumping and shouting.
“I just got celebrated to be one of the superstars and it’s going to be a very exciting day in October, I feel very good right now,” he said.
“This is my favourite time of all time.”
It is hard to imagine Aiden being anywhere but centre-stage.
He has always dreamt of being on television and, with a personality this big, it was only a matter of time before the cameras caught up with him.
“Coincidentally, it’s been years and years, and whenever he goes to PCH for his routine check-up, he will always tell his doctors and allied health practitioners ‘my dream is to be on TV’,” Aiden’s mum, Miraluna Narsico said.
“And finally he is going to get the opportunity.”
But beneath the confidence, the cheeky jokes and the seemingly limitless energy is a little boy who has spent his life defying the odds.
Born prematurely at 31 weeks, Aiden spent his first months of life between Fiona Stanley Hospital and Princess Margaret Hospital.
“Aiden’s first 14 months of life were filled with lots of unknowns, uncertainties,” Ms Narsico said.
“His main illness is called congenital central hypoventilation syndrome, basically, in layman’s terms, he stops breathing when he falls asleep, and most especially when he is sick.
“He needs assistance through artificial air via a ventilator.”
Aiden has a lifelong tracheostomy and relies on a portable ventilator which he carries with him wherever he goes.
When Aiden was just days old, he almost died in his mum’s arms.
“When he was younger, I think one week after he was discharged from hospital I had to actually resuscitate him because he just stopped breathing,” she said.
“I was alone at home because obviously my husband had to go to work and I was stood there frozen thinking I don’t have any help.
“As a parent it’s really hard to judge at that time on whether do I trust myself to actually do what’s right and you know help him, but then at the end of the day I resuscitated him I was really shaking because I just couldn’t call an ambulance because otherwise it’s going to be too late, he will only have five minutes.
“Then it happened again when he was less than two years old and it happened at 2am, and another time just last December.
“He looks very stable, very happy but then he could go really downhill very, very quickly.”
His condition, so rare only 1200 people in the world have it, requires 24-hour nursing care, regular hospital admissions and the support of specialists at Perth Children’s Hospital, including respiratory, speech pathology, physiotherapy, occupational therapy and psychology teams.
For a boy whose body places limits on what he can physically do, Aiden’s outlook on life has no bounds.
“Aidan is, he has a very positive outlook in life, which is amazing. He doesn’t really let his illness hinder what he wants to achieve,” Ms Narsico said.
Aiden’s positive attitude has turned what his parents saw as a frightening future, into one filled with victories.
“Looking back when he was younger, he could only tolerate 15 minutes at a time without his ventilator, now he can stretch it to one hour to two hours, so to us it’s a really, really big win.”
But Aiden would say his biggest win was becoming the school football team’s manager.
While he might not be able to run on to the field himself, he has more passion for the game than the whole team combined.
“He really badly wants to be part of the team but then we all know, the teachers know, that he couldn’t have that because he has to have limited physical contact because he has a cardiac pacemaker,” Ms Narsico said.
While Aiden is made of 90 per cent boisterous bones he also has a good-natured side which has made it hard for him to pick just one footy team.
“I like the Dockers and the Eagles,” he said.
But what he doesn’t have to think twice about is who he wants by his side this Telethon weekend.
“Josh Treacy and Harley Reid please come to Telethon so I can meet you. You are our best players from every WA team,” Aiden said.
Aiden has grown from a medically fragile baby into a confident, funny and fiercely determined nine-year-old who refuses to let his condition dictate the size of his life.
“Aiden is a special gift for us although it comes to challenges but he’s also giving us life lessons that you cannot really learn in normal circumstances,” Ms Narsico said.
Now, after years of dreaming about the television cameras, Aiden will finally get his moment.
“I’m really really happy for him that he gets to be a Telethon Star and this is just what I ask, for people and for the community to just keep giving him opportunities to explore life and to let him experience life because it’s too short for him,” Ms Narsico said.
“It’s going to be short for him. We know that.”
So on October 17 and 18 at RAC Arena, expect Aiden to be front and centre because while he may be small, he has never been one to take up little space.
He has spent his whole life learning how to navigate a world that has placed limits on him but if there is one thing Aiden has never been short of, it is ambition.
And now the boy who always wanted to be a star gets to shine.
