My DonateLife story had a different ending than I expected. A year ago my sister had returned from living in the USA for the last 18 years to raise her boys in Australia. She and her husband were in the process of finding accommodation, jobs and schools to start this new chapter in their lives when she became acutely unwell.

My sister had a rare genetic condition, erythropoietic protoporphyria (EPP), which causes sensitivity to ultraviolet light. Rarely does it cause liver failure, but in Jennet's case it did. She spent the last five months of her life in hospital, determining the cause of her liver failure and then the ongoing management of it. It became apparent that Jennet required a liver transplant to survive.

The events over the following months saw my sister's condition deteriorate. At the time, the doctors were also trying to 'keep alive' other patients on the ward who were also waiting for suitable liver donors. This highlighted the fragility of life and the importance of organ donation.

In the end Jennet was placed on life support. Her condition became irreversible and she was no longer a suitable candidate for transplant. It was then the medical team approached her, and us, about Jennet becoming an organ donor herself. Jennet made it very clear that this was her wish. It was then up to us, as her family, to respect this very hard decision.

This was the surreal nature of our experience. Within weeks we had gone from waiting for a donor, to my sister becoming a donor. This was hard to comprehend in the face of our own grief. I had often wondered how I would write to a family to thank them for this second chance at life, but now I face life without my sister.

Knowing that through Jennet's death, the lives of three people and their families have been improved, is the silver lining in a very dark storm cloud.

Lizzie

*This donation story was first published in June 2018 with permission.