"After seeing the amazing work the Sanfilippo Foundation delivers for families who have been impacted by Sanfilippo, I wanted to find a way that I could support their work while also raising awareness for the disorder. The money raised through this will contribute to the ongoing research being conducted here in Australia, and support other research taking place around the globe."
How has caring for a child with a terminal illness like Sanfilippo changed your view of the world?
"Caring for a child with a terminal illness does come with some enormous difficulties – the emotional impact after building a close bond with these children can be really hard to overcome. However, every time I work with these children, seeing the smile on their faces on good days is all the reward I need. Building empathy with these children and their families puts everything in perspective –the experience helps me really focus on what’s important in life and ensure I make the most of every day."
What attracted you to such a role?
"I have always had a real passion for working with children – the way children look at the world with optimism and excitement is such an inspiration, and when you have a good day in this kind of environment, it’s beyond rewarding. When you combine this with children who are facing some extraordinarily difficult circumstances, seeing the positive impact I can generate and the compassion I deliver, hopefully I’m helping make these kids’ lives a little better. It pushes me to be a better person!"
What inspires you? What makes you sad?
"The most inspirational moments in my life are always seeing happiness on a child’s face. That’s how you know you’re bringing real joy and support to those around you. However, it’d be naïve to think this could happen every day, and that can be heartbreaking. Knowing there are times where I can’t make a difference, or I can’t help, that’s really hard.
What do you want the wider community to understand about Sanfilippo?
"It'd be great for the wider community to understand the difficulties children and their families face every single day. Sanfilippo is one of many conditions that don’t have the level of awareness it deserves. Highlighting that many families will never see their children grow to become adults is something many of us will not understand but that families of children with Sanfilippoo must face every day.
Tell us about your event/challenge and why you've decided to do it?
"I am walking the Larapinta Trail, a 223km hike through the Australian outback in the Northern Territory. I’m not an experienced hiker or adventurer, so this will be a real challenge for me. I know it’ll be difficult, and I know there will be times where I’ll experience real discomfort. But I also know my experience will be nothing like those I work with, and every moment of this hike, I’ll have their experiences in the front of my mind, and I know this will push me to keep going and never give up."
What are you looking forward to most about the Larapinta Trail/what are you looking forward to least?
"While I know it’s likely to be a huge change from the environment in Sydney (not all positive differences – there’s going to be so many flies!), I’m really excited about seeing a part of Australia that I haven’t visited before and that I know is extremely beautiful. There’s something about being in a remote part of our country that you can’t find anywhere else on Earth, so I’m sure that’ll be a special experience. I’m also really looking forward to working as a team to achieve this goal together – when you do something like this in a place so remote, it’s not something you can do alone, so working with others will be highly rewarding as that shared experience will bring us closer together and create a long lasting bond."