Rare Star Event – Steve Waugh Foundation


A huge thank you to the team at Steve Waugh Foundation for inviting our family to be a part of the Rare Star Breakfast event at Sea World.


For those who may not know, Steve Waugh Foundation is the only foundation of its kind in Australia supporting children and young adults with rare diseases. Our family has been lucky enough to be a Grant Recipient for items that have improved Chiara’s potential and our family experience as a whole.


The excitement – when I mentioned to Grace and Chiara, that we were flying up to The Gold Coast to stay at Sea World and meet lots of other families living similar experiences. Thanks to the awesome team at Virgin Airlines, we travelled from Melbourne to Gold Coast, it was comforting to see other families at the airport with wheelchairs and walkers.. an instant connection that we were all heading to the same place.


Virgin Airlines Australia have recently approved the GoTo Seat, an adaptive seat which allows children with a disability to sit independently for the duration of the flight. The staff were incredible, we really can’t thank them enough for their time and support in getting on and off the flights, it made a world of difference. Happy Travellers indeed!


We had the best time, from the moment we connected with other families at Melbourne Airport through to the amazing experience at Sea World and flying back home together with other family and friends too. It was such a holistic experience that impacted our family in more ways than one.



The breakfast event was so special, having time to connect with other families is possibly one of the greatest gifts for any family traversing the world of a child diagnosis. It instantly provides community and one that by nature of circumstances, allows everyone in the room to ‘get it’.


Yep, you guessed it I shed a few tears watching the stories they presented, what astounds me is the common thread of courage, resilience, hope and joy found in overcoming adversity and it makes you stronger knowing you are not alone.

Over the next few days we formed closer bonds with the SWF families, chatting in hallways or bumping into one another at the theme park. We were so lucky that Grace our eldest daughter found a friend Mia, who is Jakob’s sister and both Grace and Mia being special needs siblings also had a bond due to the fact, that they also shared very similar circumstances.

How much fun is Sea World!

Mauro and I were so thankful to have the opportunity bring our girls on an amazing adventure and  I really can’t highlight enough the power of connection with the other families. One moment (among so many) was when a group of us met for dinner one night, I looked around at these brave warriors fighting big battles, their families (who I am sure have experienced a lot of tough times like ours) all come together and have a fun night. The compassion and connection was palpable and you know you’re in good company because none of us around the table ever had to worry about ‘what others may be thinking of our kids’, because we all just sat their owning our stories and situations and totally rocked it!

HUGE thank you to the team at Steve Waugh, what you provide for families is extraordinary through your grant system, but gifting experiences like this is something that extends to each and every family member, the parents, siblings and the kids themselves who get to see that.. after all they are not alone.


Chiara's Journey

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