One doctor, one plane, one mission: Helping raise $4.5 million for The Royal Children’s Hospital
In July 2025, Associate Professor Andrew Kornberg, Senior Neurologist at The Royal Children’s Hospital (RCH), will take off on Fly for the Kids, a fundraising adventure in the skies as he navigates Australia by plane – solo!
Andrew initially completed this epic challenge in 2017, flying for 25 days and covering 16,000 kilometres. Once again, he will take to the air on an ambitious fundraising mission to ensure more patients can access gene therapies, and other advanced therapies, at the RCH.
To bring this campaign to life and raise the significant funding required, the RCH Foundation is partnering with the Live Life Foundation. The Live Life Foundation are passionate neurology supporters who have been fundraising for the RCH since 2014. Together, the organisations will be able to ensure that more patients can access advanced therapies.
What are advanced therapies?
Advanced therapies are an innovative, and rapidly growing area of medicine that is changing how we treat some of the rarest and most complex conditions that were previously thought to be untreatable. Access to advanced therapies is not only helping children achieve milestones that once seemed impossible, but they are also reducing hospitalisations and, in some cases, providing a cure.
Gene therapy, a type of advanced therapy, replaces defective or missing genes in patients’ cells with a healthy version. For this treatment to work, a large dose of the healthy gene must reach enough affected cells. This is a huge challenge, as the human body has around thirty trillion cells.
While Australian hospitals can currently administer advanced gene therapy, specific teams, research and infrastructure is needed to ensure more children can access this life changing type of treatment. By supporting Fly for the Kids, you can help make this a reality, improving the outcomes for countless children in Victoria and paving the way for future generations.
“Join me and make a life-changing difference in the lives of sick children across Australia. Let’s take to the skies together and create a brighter future!”
– Associate Professor Andrew Kornberg, Senior Neurologist, The Royal Children’s Hospital
Meet Jacob
Thanks to gene therapy, Jacob is your typical two-year-old boy. With a love for life, cars and the outdoors, it’s hard to believe that not too long ago, Jacob was at the RCH every week receiving treatment for SMA.
At his initial six-week checkup, Jacob’s lack of movement and what mum, Brooke, describes as ‘floppiness,’ resulted in urgent genetic testing. The result? SMA, a rare genetic disorder affecting the motor neurons of the spinal cord and causing muscle weakness, damage, wasting (atrophy) and eventual loss of function.
So, when Brooke was confronted with this reality, she couldn’t help but breakdown.
“Everything was so overwhelming. I was crying and we still just had no idea what was going on. Once we met the doctor, however, we felt things weren’t going to be as bad as we initially thought,” Brooke shared.
Jacob was taken directly to the RCH’s Neuromuscular Clinic the day after his diagnosis, receiving multidisciplinary and specialised care for SMA. Fortunately for Jacob and his family, the toddler could access transformative gene therapy at the RCH last year, drastically changing his quality of life.
“The biggest thing we used to focus on was survival and keeping Jacob alive. Now we’re aiming to get Jacob to walk, which wasn’t even a thought for kids with SMA 10 years ago,” Brooke said.
Despite being slightly reluctant at the time, Brooke and her husband are incredibly grateful that Jacob was able to benefit from this new therapy.
“At the start it was obviously very daunting, especially because it was a relatively new thing. But looking back now, we would 100 per cent do it straight away,” Brooke shared.
Unfortunately, shortly after the procedure, Jacob contracted a respiratory virus which took him to the intensive care unit. While this was a period of immense stress for the family, it was during this time they were able to see the treatment take full effect.
“Jacob was hospitalised and intubated for three weeks when he was six months old. Realistically if Jacob hadn’t had the treatment, he would no longer be with us,” Brooke explained.
Today the family are incredibly optimistic about Jacob’s future. He has spent more time outside the hospital, and Brooke is proud to say that this treatment works.
Access to gene therapy, and other advanced therapies, at the RCH will help ensure that even more children like Jacob can receive this life-changing treatment, completely revolutionising care for children in Victoria and beyond.
“The things that Jacob is doing now because of the gene therapy are just unbelievable. It’s unbelievable to think that something so complex wasn’t available just a few years ago,” Brooke said.
“It has given Jacob a chance of life,” she added.
Our sponsors
This unique fundraiser is not possible without the incredible support of our sponsors.
Contact us
You can help support Fly for the Kids and bring this new, innovative model of care to the RCH.
If you would like to learn more, please reach out to the Fly for the Kids team. Sponsorship packages are available.
Olivia Ouyang
Manager, Corporate Partnerships and Fly for the Kids Lead
03 9345 4507
olivia.ouyang@rch.org.au
Jaxon Edwards
Fundraising Coordinator, Fly for the Kids
03 9345 5059
jaxon.edwards@rch.org.au