It’s hard to tell from the outside that a child has a genetic disease – which is exactly why Charlie’s parents were in denial when he was diagnosed with Cystic Fibrosis as a newborn.
Like most 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 Cystic Fibrosis.
Travis said he had been crying, feeding, sleeping just like any newborn – which made it harder.
“It was a total shock,’’ Travis said. “And then it just sort of started becoming so real.’’
As they struggled to understand what Cystic Fibrosis was, at five months they were launched into their new reality when Charlie’s pancreas shut down and he was put on medicine.
Learn more about Cystic Fibrosis here.
“For Charlie, every day it means that he takes up to about 20 pills. He needs medicine anytime he eats anything. He does physiotherapy every day.’’
For them COVID-19 has exposed regular families to the everyday fear they face. During summer they had to leave their regional home for weeks due to bushfire smoke, and preschool is a constant battle.
“It is very much ‘welcome to our world of living in fear of germs’,’’ Cassie said. “We have to constantly assess the risks of Charlie leaving the house,’’ Cassie said “Preschool is very tough because a lot of kids will come with gastro or sicknesses. And Charlie's ended up in emergency a few times for gastro and severe dehydration. So, a cold and flu, which for somebody might last a couple of days, but Charlie it can last him weeks and cause irreversible lung damage. So, it's pretty tough.’’
They are part of Jeans for Genes because they can see what research has already done.
“Research is really important because we're so close to a cure,’’ Cassie said. “We're nearly there, and so if we can get there in Charlie's lifetime, then that would be fantastic. It would just mean the world to us and to anyone that's born with cystic fibrosis that they can have a long and happy life.’’
Travis urges people to invest in research because, just like them, you never know when you’ll need it.
“I'd encourage people to donate or get involved because you never know if it could happen to you or to someone you love. You never know. It might be you.’’