Mudgee's Charlie Rixon is the self-described 'cutest' face of Jeans for Genes Day 2020.
For Charlie and his family, putting him in this year's campaign was part of a deliberate move to put a face to genetic disease in Australia.
It's often hard to tell from the outside that a child has a genetic disease - which is exactly why Charlie's parents Cassie and Travis were in denial when he was diagnosed with Cystic Fibrosis as a newborn in February 2015.
Charlie was diagnosed with Cystic Fibrosis at six weeks old. Cystic Fibrosis is a genetic disease that approximately 1 in 25 people carry and - as described by Cystic Fibrosis Australia - primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
Like a lot of first-time parents, Cassie and Travis were busy adjusting to their new life with a baby and weren't even thinking about the results of all the newborn screening tests taken in hospital, when at eight weeks they were told he had the genetic disease.
But it didn't stop there, as Cassie and Travis struggled to understand what Cystic Fibrosis was, at five months Charlie's pancreas shut down and he was put on medication.
"For Charlie, every day it means that he takes up to about 20 pills,'' Cassie said.
"He needs medicine anytime he eats anything. He does physiotherapy and nebulisers every day.''
From the outside, Charlie looks like any other five-year-old, but that's why, as Charlie's mum Cassie explains, it's so important to educate people about Cystic Fibrosis and how it affects those who have it.
Cassie said this year's campaign helps generate awareness of Cystic Fibrosis on a national level. You'd know the Jeans for Genes campaigns of the past featuring plenty of people wearing denim to spruik the cause but to most people it didn't inform them about what genetic disease is about.
And Charlie was more than happy to pose for the camera. Charlie's face can already be seen around Mudgee on posters displayed in businesses around the region.
"Charlie is a performer. He loves it. So he had a blast at the photoshoot. When we did the shoot back in February before all restrictions were in place he was in front of the camera, just loving it. He really does put on a good show," Cassie said.
"We've seen the photos, he's seen himself all over the internet and he sees himself pop up in my Facebook feed and he's like, 'that's me!'. Yeah, he loves it."
Masks save lives
Life with Cystic Fibrosis can be challenging, for Charlie and his family, bushfires and the COVID-19 pandemic have made it even harder. Though Cassie says there is a silver lining.
"It is very much 'welcome to our world of living in fear of germs','' Cassie said.
"So COVID has actually been quite eye-opening for everybody So the panic that everyone is experiencing that's my everyday panic, you know, germs and viruses. It sort of does freak me out.
"We have to constantly assess the risks of Charlie leaving the house. Preschool is very tough because a lot of kids will come with gastro or sicknesses. Charlie has ended up in emergency a few times for gastro and severe dehydration.
"A cold and flu, which for somebody might last a couple of days, can affect Charlie for many weeks and cause irreversible lung damage. So, it's pretty tough.''
Cassie said the culture shift toward social distancing and wearing face masks will hopefully have a positive effect in changing the habits of people carrying illness in the future.
"It'll be interesting if people can take away from COVID that all these restrictions - it's actually what some people have to live with. And if there's that little bit of understanding and compassion towards other people, that would be awesome," Cassie said.
"It's funny, I see people quite a lot complaining about wearing a mask since he was one and a half and he goes quite comfortably to the hospital. Because infection control is such a huge thing for us.
"So it sort of makes me think 'man if a five-year-old with a lung condition can wear a mask quite comfortably for a few hours, why can't you?"
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