Joseph
When young parents Sarah and Carmelo learned their child had a genetic condition, they feared for his future – but when they discovered what medical research is doing about it, they gained new hope.
This Jeans for Genes Day, on Friday 2nd August, everyday Australians can help Children’s Medical Research Institute produce outcomes that could change lives – just like Harrison’s.
Sarah and Carmelo were first time parents when Joseph was born. He didn’t feed or sleep well but his parents didn’t worry too much until they got a call about his newborn screening results.
“When you get a phone call from the paediatrician saying, ‘your son is testing very high for cystic fibrosis’ the first thing you do is Google it,’’.
And when you type in ‘what is cystic fibrosis’, and it says you have a life expectancy of around 25 years… The first thing I did was burst into tears and threw up.
But medication exists to treat patients with cystic fibrosis, and luckily for Joseph, he has only ever been hospitalised once.
He does require daily treatment and must avoid high risk environments.
“We are blessed that Joseph is actually on track now,’’ Sarah said.
“We always hoped that one day when he's older, he might not have to have CF, that maybe there would be a cure. So, the future is always bright.’’
Hope has grown even more as the family heard about CMRI’s research on gene therapy for CF. This could mean that one day a simple injection could provide a cure.
“We're the lucky ones, I guess. There are other kids that are way more sick,” Carmelo said. “And when we went to the Jeans for Genes research facility and learned about gene therapy – it’s amazing to think that not only could it help Joseph and kids with cystic fibrosis, but a lot of other genetic diseases."
When you donate to Jeans for Genes you are not just curing one disease – you could be curing many.
Jeans for Genes raises money for the vital work being done by the scientists at CMRI to find treatments and cures for diseases including epilepsy, cystic fibrosis, cancer, genetic blindness, and many more of the 7000 genetic diseases that impact Aussie kids.
Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, do some Ks for Kids by walking, running, skipping or any form of exercise you like – or simply wear jeans just like millions of Australians have done for more than 30 years.