02/04/2026
Last week, my son turned 17 🎉
When he was around 18 months old, we knew something wasn’t quite right. That kicked off years of tests, appointments and a lot of unknowns.
Eventually, thanks to the incredible team at the Royal Children’s Hospital, we got answers. He was diagnosed with an extremely rare genetic condition, with less than 15 known cases worldwide.
What makes his story even more unique is how things have unfolded since. His journey has helped doctors and researchers better understand the condition, his case has been published, and today he’s the oldest known person living with it.
It’s a reminder of how important research, care and persistence really are.
That’s why the Good Friday Appeal matters. It supports the Royal Children’s Hospital and helps families like ours get answers, support and hope.
If anyone is interested, I’m happy to share the study done by RCH and MCRI.
Thank you 🙏
