Rare Star Day @ Steve Waugh Foundation
On behalf of our family we would like to thank Steve and Lynette Waugh for their incredible work that they do for so many children with rare diseases.
The team at Steve Waugh Foundation are ‘somewhere to turn’ for children and young adults with rare diseases. Not only do they help with children who have rare diseases, they also offer respite care, research and help to raise awareness.
We were lucky to receive a grant for Chiara’s eye gaze communication equipment, which will allow Chiara the ability to communicate her needs with the world around her. It’s mind blowing to think about the potential that this communication device holds for her and our family.
As Chiara was a grant recipient, our family was invited to the annual Rare Star exclusive event, hosted by the Steve Waugh Foundation. We flew up to Sydney, along with many other families around Australia to be a part of this beautiful event. This event coincides with World Rare Disease Day #ShowYourRare #RareDiseaseDay, so it’s another great way to raise awareness for all the Rare Star’s.
We laughed, we cried and most importantly we had fun!
There was even a red carpet arrival with live music (bagpipes) and entertainment throughout the day. So cool!
Chiara was a little scared of the costumes of Peppa Pig and Sponge Bob, she has trouble processing and understanding life sized costumes. So we missed out on the red carpet photo opportunity at arrival, however we were lucky to get a photo afterwards.
The day was full of action packed fun!
Yes any excuse for mum to get some butterfly 🦋face painting action! Grace was proud and Mauro was beyond happy to meet Steve Waugh!
The most amazing part though, is the connection to other families in similar situations. Having a child with a rare condition can feel incredibly scary and isolating, so events and communities like this, provide an extraordinary amount of hope, support and friendship.
Isn’t it amazing that something so rare, actually connects us to communities that we would otherwise never had connected with. In a sense, it’s as though our village expands and for any family raising a child with a serious health condition – this means so much.
‘No one should have to stand alone. Everyone needs a team to support them.’ – Steve Waugh
Thank you again to Steve and Lynette Waugh and to the rest of the team at the foundation who made this possible. As I sat back and watched both my daughters Grace and Chiara enjoy a family day out, I felt so proud, not only of all the warrior children who fight huge battles on a daily basis, but also for their families and for communities just like these.
Thank you also to Canon Australia, Virgin Airlines and all the volunteers.
Love Natalie, Mauro, Grace and especially our little rare star – Chiara