Queen Khai’s Paediatric Palliative Care Fund
This page is in honour of Queen Khai. Born Khai Moira Fraser on the 27th of March 2024, at 12:55pm.
Khai was diagnosed at 10 weeks old with an ultra-rare and untreatable life-limiting disease, GM1 Type 1.
Our family met with the Canberra Health Services Paediatrician (Tiffany Krause) and Paediatric Palliative Care (Kendell Smith) when Khai was about 12 weeks old.
Since then, we've worked with these services to continually meet the challenges of an ultra-rare disease, anticipatory grief and now grief. As first-time parents, we were also part of the learning journey with the team.
For the hardest phase of life, we were supported in all our decisions. We were empowered because we were heard, and part of the collaboration. Our decisions and choices were guided by evidence and expertise, but ultimately, whatever we chose, it would be honoured and respected. Tiff and Kendell even honoured our cultural considerations, and changed the dialogue around death and dying. We felt comfortable and ourselves, we felt part of the team.
The team represented and advocated for us. Our long stays on the wards of the Children's Hospital were easier because of them, most of the doctors and the hard working and wonderful nursing staff.
Our family experienced this high-quality care over a tragically trying 15-month period. Khai moved on to the next place on the morning of 23rd of Sept 2025, at 3am, sleeping peacefully snuggled between her Mummy and Daddy. 17mo and 26 days old.
We continue to receive support from the team, and would be much worse of without it.
The work the Paediatric and Paediatric Palliative Care teams provide is beyond financial value.
The team provides comfort and meaningful engagement with parents and families in one of the most heart-breaking journeys.
These services and people are essential, nay, critical to better care and support for families. Unfortunately, there is not enough resources to ensure all families are receiving this highest quality care.
Please donate whatever you can to help these critical services keep up the high standard of care, and get more paeds and paediatric palliative care supports.
