Maria Vamvakinou (Calwell, Australian Labor Party) Share this | Link to this | Hansard source

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-Joe and 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.

Not much is known about TTD in Australia, let alone treatment for adults. Sammy-Joe has been receiving critical intravenous immunoglobulin treatment, IVIG, which effectively checks his bone density. It's a treatment that is required every three years and is administered over six months. Although Sammy-Joe has received amazing support and care from the Austin Hospital, unfortunately they cannot provide IVIG treatment, which is critical to treating the symptoms of Sammy-Joe's disease. The blood bank has set criteria that Sammy-Joe, as an adult, doesn't fit and therefore he doesn't qualify. The only way to get IVIG treatment is to pay for it or travel overseas. This is no longer a viable option for the Liistro family. Unlike the United States, where Sammy-Joe has received treatment, there is not enough research available in Australia to link the treatment of IVIG and TTD in adults—research that would enable criteria to be set that would allow Sammy-Joe access to the treatment. With the exception of Sammy-Joe Liistro, no TTD sufferer has survived to adulthood, so it's not prioritised and it's all a bit too hard.

What Maria Liistro and her son Sammy-Joe ask is that the government puts this treatment on the list of chronic diseases for young adults, as without it Sammy-Joe will suffer insurmountably and so will his family. Sammy-Joe's life is an inspiration. In raising awareness of this rare genetic disorder, I want to call on the government—in fact, call on all of us—to do a little bit more in treating TTD as it develops into adulthood. I want to end with some words from Maria Liistro. She is a great inspiration. She says:

Sammy-Joe is my pride and joy, my heart and soul, and my whole reason for living.

He is truly a miracle child and a survivor, an inspiration to his family and friends.

Like all parents, we want everything for our son, and thinking ahead about what the future may, or may not hold, makes me strengthen my determination to see that my child has every opportunity and experience he deserves.

In raising awareness of this very important and rare condition and this wonderful family, the Liistro family, I ask that we pay some attention to assisting Sammy-Joe and his family.