Before this year, most parents had never worried about their children being diagnosed with a deadly disease that had no vaccine, treatment or cure – but now the world has experienced exactly what so many families live with every day.
This month, as we launch the 2020 Jeans for Genes campaign, and Australians start to return to their normal lives – the families of the 1 in 20 children who live with a genetic disease or birth defect can only dream of what that must feel like.
Their kids must always stay home from school if their classmate has a sniffle or they could end up in intensive care. They cannot just sign up for the school soccer team when their legs are barely strong enough to hold their weight. Their parents have given up jobs just to be able to offer the care they need.
Julie Gravina is mum to Charlize, who lost her twin brother to the same genetic disease she lives with, and she feels a strange sense of relief that people have had a glimpse into her life.
“Everyone is now getting a taste of what we’ve lived,’’ Julie said. “We’ve had to create a world in a bubble for her.’’
Charlize had a liver transplant to save her life, but it has only bought her time.
“The liver transplant has saved her life, but we live in fear of rejection, and she still has a limited life span,” Julie said. “If she could be given gene therapy, her life span would be normal. We hope now most importantly, maybe people will understand the importance of research.’’
Kate New is mum to Lachlan who has never walked nor talked like his sister. She also hopes that Australians now value research in a renewed way.
“I hope this experience shows people how important research is,’’ Kate said. “The only way life will return to normal after COVID-19 is a vaccine. For us, I feel so strongly that people need to value research. I look at scientists that dedicate their lives to this research, and they are superheroes in my eyes.’’
The importance of medical research has never been more evident to the world but when the pandemic is over, the battle continues for these families.
Jeans for Genes is the iconic fundraising campaign behind Children’s Medical Research Institute (based at Westmead), 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 the disease.
Sign up here to fundraise now. You could fundraise online as an individual, have an event in workplace, sell merchandise in your shop or office – and don’t forget to encourage local schools to wear denim and fundraise on August 7. Find out more at jeansforgenes.org.au