3 September 2024

Nikki Lee was born with a rare genetic disorder called Alagille Syndrome, a condition that affects multiple organs and systems within the body, including the liver, heart, bones, hearing and vision. Throughout her life, Nikki has sought care from a range of medical specialists, including many at Austin Health.

She reached a critical moment in her medical journey at just 13 years old, when she reached the end stage of liver failure. A surgical team led by Austin Health’s Professor Bob Jones performed a liver transplant at the Royal Children’s Hospital, saving her life.

In her 20s she became a full-time patient at Austin Hospital, which at times has become a second home for Nikki, who has received care as a liver transplant patient, but also a cardiology, dermatology, endocrinology, ENT, haematology, neurology and orthopaedic patient as well.

Expert care for a complex condition

Despite the challenges posed by the hour-long journey from her home to the hospital, Nikki still takes the time to travel to Austin Health. “Each time I go to the Austin I am so glad to be there. I know they can care for my complicated condition,” she says.

Nikki says the staff always provide her not only with expert medical care, but also compassion and support. This was particularly evident when she had a permanent catheter inserted last year – a procedure that was made more bearable by the attentive care and clear communication from her nurses, who explained the procedure step by step.

Sharing her experiences with others

Nikki has chronicled her experiences in her book, Alagille Girl. The book offers an intimate look at her life, from her early diagnosis to the challenges she has faced, including a failing liver, sensory impairments, broken bones and moments of despair. It explores the difficult questions she has grappled with – questions about why she was afflicted with such a rare and challenging condition, and how she has found meaning and purpose in her struggles.

Nikki says she hopes her story will resonate with others, offering encouragement and inspiration to those facing their own challenges.