The Australian government is now operating in accordance with the Guidance on Caretaker Conventions, pending the outcome of the 2025 federal election.
In 2019, new parents Kath and Jay welcomed their twin boys into the world, but it wasn’t long before they knew something was wrong. Louis was pale, puffy, floppy and vomiting.
After rigorous testing on both children and their parents, they discovered their twins had congenital nephrotic syndrome – a kidney disease so rare that it affects less than 4 in 100,000 children worldwide.
They were born with abnormal kidney filters, which caused too much protein to leak into their urine. The twins had to be hooked up to dialysis machines 10-12 hours a night to help their kidneys filter out waste.
Louis and Theo’s first year of life was spent in and out of the hospital, undergoing surgeries, needles and infusions. They missed out on seeing family and celebrating their own birthdays because they were too unwell. But in 2024, a few weeks after being put on the kidney waitlist, the twins received kidney transplants.
Post-recovery from their transplants, the twins are no longer on dialysis and are excited to eat anything they want, including their favourite food, potato bake. Both have since graduated from kindergarten and have danced their way into prep.
‘So far, everything has been amazing. We’re very ecstatic and still coming to terms with not having to do dialysis anymore,’ dad Jay says.
‘One conversation could just make the world of difference,’ says Mum Kath. ‘Look at our children – they are alive today because of someone making that choice to sign up as an organ donor and having that hard conversation with their family. We are so grateful.’
