Ms SPENCE (Yuroke—Minister for Multicultural Affairs, Minister for Community Sport, Minister for Youth) (09:40): Today I pay tribute to the life of Jessica Dibella, a creative, passionate and persistent young woman who recently passed away far too young at only 26. Jess lived with autism, intellectual disability and Ehlers-Danlos Syndrome type 6, or EDS, which is a rare connective tissue disorder that is degenerative and incurable.

I came to know Jess, her mother, Michelle, and sister, Bree, around five years ago after Jess self-published her book, Don’t Call Me Disabled I’m Just Like You, just one example of Jess’s determination to raise awareness of EDS. Jess painted a picture for my office with one element being a zebra because, Jess told me, like a fingerprint, no two zebra stripes are the same, and the difficulty with EDS is that no two patients are the same. There is no doubt that Jess was her best advocate. She knew and understood her health conditions better than anyone else, much to her frustration sometimes.

In 2017 Jess and Michelle were featured in a TV documentary. Their good nature and positivity resonated so strongly that the public raised over $120 000, which achieved Jess’s goal of travelling to the US to meet the world’s best EDS specialists. Whilst this helped Jess and her family pursue treatment options and meet others with EDS, her condition continued to deteriorate.

Jess never stopped advocating for more awareness of EDS, and I have no doubt her incredible work will continue to leave its mark for years. Throughout this has been the incredible strength of her mother, Michelle, and to Michelle, Bree and Jess’s family and friends, including her grandparents Nola and Barry, I pass my sincere condolences.