Meryl Swanson (Paterson, Australian Labor Party) Share this | Hansard source

I have just been to a barbecue—which is a great, Aussie thing to do—hosted by the Parliamentary Friends of Rare Disease. I bet many members in this House do not realise that two million people across our country live with rare disease. That equates to 5,000 people in each of our electorates. I want to thank the member for Hindmarsh and the member for North Sydney, who hosted the barbecue with Rare Voices Australia.

I met a wonderful man called Chris Walker. He has two little grandchildren, Jordan and Logan, who are seven and four. They have an incredibly rare condition. In fact, there are only three people in the world that have their condition. They spend 15 hours a day being fed through the superior vena cava of their bodies, yet one of them is going to school. But they cannot get onto the NDIS. I am so pleased to see Jane Prentice in the House. I know she can help these people and I am really urging her to do that.

We have some amazing people in Australia who are battling some of the rarest diseases in the world. We have a first-class health system. We have this incredible National Disability Insurance Scheme. Surely some of these people can be helped through the scheme. I know it is possible to help people like Logan, Jordan and Chris, who desperately needs some respite because, between him, his wife and the mum, they are the only ones who care for these little boys. We can make it possible.

See this speech in context