Local Boy the face of Jeans for Genes
Post date: Aug 5, 2020 10:43:58 PM
Friday August 7th is ‘Jeans for Genes day’, with a local boy to feature as the face of the day for 2020.
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 Charlie 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 more medication. Charlie is one of the faces of this year’s Jeans for Genes campaign.
“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.’’
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. 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.’’
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. “Treatment for Cystic fibrosis has come along in leaps and bounds in such a short time, and we’re nearly there, and 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.’’
Jeans for Genes is the iconic fundraising campaign behind Children’s Medical Research Institute, which aims to find cures for children’s genetic diseases. Our researchers are taking ideas from the labs all the way to the patient in hospital to shrink the timeline from diagnosis to cure – which could mean the difference between surviving or not surviving a disease.
The big day is on Friday, 7th August, but you can sign up now to start fundraising online at jeansforgenes.org.au and make a lasting different to generations of children.