Just over a month ago, Associate Professor Andrew Kornberg returned home after a fundraising adventure like no other – flying solo in a single engine plane around Australia to raise $4.5 million for advanced therapies at The Royal Children’s Hospital (RCH). We recently caught up with the much-loved doctor and our Fly for the Kids Captain to recap his trip and find out what else needs to be done to help bring advanced therapies to children battling rare and complex conditions.
Flight-tracker stats:
- 24 days away in total, with 21 of those flying
- About 21,000 kilometres travelled
- More than 51 hours spent flying
- 22 stops along the way
- And approximately 96 coffees
THE WHY
Q: Why did you originally set out to do this trip?
A: The trip was to raise $4.5 million for advanced therapies at the RCH. The money raised will be used to support dedicated beds, infrastructure, resources and specialist staffing needed to administer advanced therapies for children battling rare and complex conditions. These children and their families need these life-saving treatments and as one of the top five paediatric hospitals in the world, the RCH needs to be a place that can deliver these treatments to any child or young person that needs them.
Q: Why are advanced therapies so important?
A: Rare diseases refer to conditions that affect fewer than 1 in 2000 individuals, so actually, they are not as rare as you’d think. While each condition is individually rare, when you put together all the different rare disorders, it becomes quite common, and many people will know someone, have a family member, or know of someone who is connected to someone affected by a rare disease.
Currently, over 70 per cent of rare diseases have a known or presumed genetic cause and therefore new treatments including advanced therapy treatments such as gene therapy can transform and even save lives. A good example of this is a condition called spinal muscular atrophy (SMA). SMA is a progressive disease that presents in infancy and comes with a life expectancy of two years of age. Over the last decade new advanced therapy treatments have transformed the way in which we can treat kids with SMA – kids just like Jacob and Axel.
But SMA is just one condition that can be treated with advanced therapies. There are so many others, and the possibilities for more solutions to more conditions with advanced therapy treatments in the future is endless if we have the money to put towards research, staff, resources, etc. Having these dedicated beds, infrastructure, resources and specialist staffing at the RCH means children are treated expeditiously in a place where expertise is around them making sure that the treatment is effective with lower risk.
Q: What inspired you to be the one who put yourself on the line to raise this money?
A: My mum told me something when I was about 12 years old. She told me, “Andrew, in life, you’re born and then you die. But it’s what you do in between that’s important”. My mum is gone now but it’s something I always remember and cherish. Every day that I go to work, I am privileged that I do what I can do. And I am privileged that families allow me to be part of their lives for sometimes 25, 30 years.
Fly for the Kids is probably the most important thing that I’ve done because this can help all the kids now and into the future, and it will become something that is Australia-wide with dedicated beds and dedicated infrastructure in the end.
THE TRIP
Q: What kind of escape does flying give you from your job as a senior paediatric neurologist at the RCH?
A: Flying is so different to being a paediatric neurologist. Being a neurologist can be a complex job sometimes, so being able to engage in my passion for flying gives me a bit of a break from the hard things I have to occasionally do in my day-to-day role as a doctor. However, I also use flying for work purposes. I fly to NSW for outreach clinics which allows my two passions to come together which is amazing.
Q: What did you love most about flying around Australia?
A: The most incredible thing about seeing Australia is the simple beauty and breadth of our wonderful country. What makes it even more special was meeting people from all walks of life. It also has been nice to see how the RCH is known everywhere, and people were very interested in the need. They all want to support which has been so nice because we really can’t make this happen without the support and generosity of the community. People are so kind and caring, and I will always remember all the special people I have met along the way.
Q: What was the most challenging part of the trip?
A: The most challenging experience of the trip was the availability of fuel. I first came up against this issue early in the trip when I had planned to land in Karratha for fuel and an overnight stay, but I found out that fuel specifically for my type of plane was not available. Some quick recalculation and calls led to me to Port Hedland for fuel and an overnight stay instead. The flight was hard, very difficult, but nothing like the difficulty that patients and families suffer on a day-to-day basis when battling rare and complex medical conditions.
Q: What was the best part of the trip?
A: The entire trip has been great, but I think a highlight for me was landing at Forrest Airport (the edge of the Nullarbor Plain), where there is a population of two people and they stay at the airport where they also hosted me. I was hosted by Donna and Andy and had dinner at their home. Hearing the stories of Forrest Airport and the history of the place was fantastic. The night was peaceful without sounds, the night sky magnificent. I will never forget Forrest as a destination.
THE MISSION CONTINUES
Q: You’ve just ticked over $2 million in fundraising of your $4.5 million goal, what still needs to be done to get to that goal?
A: Reaching that $2 million mark is an incredible achievement – but we’re only almost halfway to what we need to get to. The need to make this happen for our children is still so great, so we need people to keep showing up, keep talking about this to raise awareness, and ultimately, keep contributing whatever amount you can to make this a reality.
It’s the communities’ fundraising, donations and conversations that will help us reach that $4.5 million target.
Q: What will this ultimately mean to the children and families that it will help?
A: I know that advanced therapies is not something most people talk about, but it very much should be. Because the statistics tell us that everyone will likely know someone – a child or a family member – that is being impacted by rare disease.
These conditions don’t just impact the child; they impact the whole family and the community. Often the burden of care for these kids is so significant that the parents are unable to work, their siblings are impacted, the child’s ability to get or maintain education and friendships are negatively affected. The impacts from a medical perspective are huge but we also can’t forget the social, emotional and financial challenges.
These therapies are giving children and families hope where there once was none, and I don’t say that lightly. For some, it will improve their quality of life or prolong their life, but for others, these therapies will save their lives. That $4.5 million will allow us to ensure that when a child comes through the doors of the RCH needing a specific therapeutic treatment for their rare condition, we have the means – the bed, the doctor, the researcher to look into it, whatever it may be – readily available.
So please, give as much as you can as soon as you can, or host a fundraiser at work or out in your community, and help us get to that goal. Because while we see it as a goal, it is $4.5 million worth of hope for so many.
While Andrew’s flight has ended, the mission continues. Your generosity and support can bring hope to sick children and their families. Your donation, big or small, can bring us closer to our $4.5 million goal but the impact of the medical care that it will provide will be life-changing, and priceless for the many children and families that it will help.
To show your support, visit flyforthekids.org.au.