When it comes to medical research – no one is more hopeful than the mother of a child with cystic fibrosis.
“One of the best things that we were told right at the beginning was this was the right time to have cystic fibrosis. This was the absolute time to have it - that so much was being done. The treatments, the research, everything was happening with cystic fibrosis.’’
Bianca’s eight-year-old son Archer is one of the faces of the 2023 Jeans for Genes campaign which raises funds for the vital work being done in the labs at Children’s Medical Research Institute. Scientists are finding treatments and cures for the 1 in 20 children living with birth defects and genetic diseases like cancer and cystic fibrosis, by performing world-leading medical research.
Archer was diagnosed with cystic fibrosis as a newborn baby, thanks to the heel prick test. As he was the youngest of four children with no known health issues, Bianca wasn’t expecting the news.
“He was three weeks old, and a phone call came out of the blue one night when I was home with the four kids,’’ Bianca said. “When I got off the phone, firstly I’m thinking - what did it mean? What was cystic fibrosis? I hadn't encountered anyone with cystic fibrosis in the past. What did it mean for his life? That was the biggest thing.’’
Cystic fibrosis is a chronic lung condition which requires children to take daily medication for their whole life. Each case is different, but any hospitalisation is serious. Archer has only ever been in hospital twice, when he was quite young, and has remained strong and healthy. Bianca knows that they are one of the lucky ones.
“It is really just a case of keeping him as well as possible,’’ Bianca said. “We're big on ‘don't touch that. Don't put that in your mouth’. There are things like playing in the dirt that we try to avoid and making sure we’re all cleaning our hands. But we have tried not to put him in a bubble.’’
Sport helps keep Archer’s lungs strong – you name it, he does it.
“His physio is swimming, basketball, cricket, football, running around chasing his siblings. The more active he is, the more he's using his lungs and the fitter we can keep his lungs, the healthier we can keep him.
“Our doctor told us, new drugs will come out, then the researchers will cure the disease, and then we will have ticked both boxes. It will happen - it will absolutely happen. I have 100% faith that it will happen.’’
One of those researchers working to find a cure for CF is Associate Professor Leszek Lisowski from Children’s Medical Research Institute. His team has been working on ways to deliver a gene therapy into the lungs, which scientists have struggled with in the past. “We are very excited to help children struggling with CF and want to offer real hope to their families.’’
Bianca’s mother Fiona has been on the Canberra Fundraising Committee of Children’s Medical Research Institute for many years, so she knows all about the importance of investing in research.
“Gene therapy research is well underway,’’ Bianca said. “It's still something that completely amazes me. My family growing up has spent so many years fundraising for Children's Medical Research Institute and to go into the labs, to see the researchers working on curing devastating genetic diseases, is just mind blowing.’’