Sydney Morning Herald helps Sasha

Thank you The Sydney Morning Herald and Angus Thomson for giving Sasha a voice — and helping raise awareness. 💜 Your coverage of the first part of our journey was done with sensitivity and helped the wider community understand the challenging path that lay ahead which we have conquered.

Your reporting is changing her future and rare disease kids just like her. In just under a year and a half we are on the brink of celebrating us locating the exact cure for Sasha. But - before we can dose her we must test for safety and manufacture her medicine. We need to move fast and that is what we are doing and have done.

We can’t possibly spread the word alone. Mainstream media is a major gateway to getting the word out about ultra rare disease and creating a personalised medicine pathway for the children and families who are so ultra rare, they’re often told there is no treatment and no cure. SLC6A1 is a disease that rips abilities away from an already developed child leaving them an infant trapped in a large body.

The diagnositic odyssey ended when Fran Evesson and Sandra Cooper from Children's Medical Research Institute found Sasha’s mutation. 🙏 After receiving the heartbreaking diagnosis, we haven’t stopped fighting for our sweet daughter.

Prof Sue Fletcher AO Laura Croft Rodney A. Bowling Jr., Ph.D. Neda Ghousifam QUT (Queensland University of Technology) Murdoch University To Cure A Rose Foundation - the scientists and institutions moving this forward at a rapid pace are hero’s - finding Sasha’s personalised ASO cure that will change her entire life.

We have science, we have realistic hope and most of all - we have fire under us fueled by our precious daughter who deserves a future. 💪

Please share, repost and donate if you can 🙏 https://www.gofundme.com/f/savingsashaslc6a1