Sue talks about Carers Victoria and her kids Jas and George
Mandy and Kate chat to Sue, Chair of Carers Victoria, the peak body representing all unpaid carers in Victoria. Sue is an experienced communications consultant who has worked in executive roles and run her own business for many years, while also caring for her four children. Sue’s two oldest children both had a very rare genetic condition called Niemann Pick Disesase Type C. Her daughter Jas died from the condition at the age of 14, and her son George also died of the condition three and half years later at the age of 19. Sue joined the Carers Victoria board in about 2014, shortly after losing George.
Sue talks about managing the children’s diagnosis and care in a time prior to the NDIS, coming to terms with the news in her own time and finding her own strength before sharing the news with others, and finding her tribe of supporters and friends through the specialist school system. She shares some frank and funny conversations about the times she took her children travelling overseas and camping locally with all of their medical equipment and needs, the kindness of strangers at some times and the terribly rectum behaviour from some at other times.
Sue has seen plenty of change in the almost ten years on the board at Carers Victoria, and although there’s a keen emphasis on building an inclusive community and making social services work a lot better, there’s still a long way to go in supporting carers better, as Peas well know. Sue encourages everyone to connect with Carers Victoria, or the local carers advocacy network in your local area, to add your voice in advocating for change. Thanks for sharing the remarkable story of your family with us Sue.
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