My speech in parliament to raise awareness on trichothiodystrophy - 19 October, 2017

In 2004, I first spoke in the parliament about an incredibly brave young boy named Sammy-Joe Liistro and the life he endures with the rare genetic disorder, trichothiodystrophy, or TTD. I met Sammy-Joeand his mum, Maria, when she came to me for help all those years ago.


Sammy-Joe is now 28 years old and, thanks to the unwavering love and dedication of his mum, his supportive family, friends and the community, and the fantastic care of our medical profession, he has exceeded all expectations. At 28, Sammy-Joe is the oldest living TTD sufferer in Australia—a phenomenal outcome but one that comes with a new set of challenges for Sammy-Joe and his family.