News

Palliative Care NSW (PCNSW) and our members first heard of Bodhi’s story at our 2024 State Conference in Tamworth. It was at this conference that Nurse Practitioner Teresa Gillies, and Clinical Nurse Specialist Emily McBride from Illawarra Shoalhaven LHD introduced us to the incredible 18 year old Bodhi and his family. Their presentation was one of the highest rated at the conference, as they shared how they navigated the care of Bodhi, how they adapted their practice and experienced the highs and lows during his last 6 months of life. For the team it was an emotional journey of advocacy for an adolescent, transgender patient living with a high symptom burden from a terminal neurodegenerative disorder.

Bodhi had an impressive bucket list that the team were able to help him achieve, including Bodhi participating in the Sydney Mardi Gras in 2024, just a couple of months prior to his death. He had one final request though, which was for the Adolescent and Young Adult Hospice (AYAH) to march in his memory in 2025.

On Saturday 1st March, AYAH staff members, volunteers and Bodhi’s family proudly joined People with Disability Australia (PWDA) in the Sydney Mardi Gras parade, carrying signs and symbols to honour Bodhi’s incredible legacy. The team at AYAH shared the following:

“The atmosphere was electric as the crowd took in the messages of inclusion and remembrance, reading our signs with emotion, reflection, and joy. Many PWDA participants fondly recalled meeting Bodhi at last year’s event, adding another layer of meaning to the night, at AYAH, we were honored to have walked in his memory.”

The Adolescent and Young Adult Hospice (AYAH) which is located in Manly, are privileged to support young people in making the most of every moment—bringing comfort, joy, and dignity to their journey. Bodhi left an indelible mark on their hearts, a vibrant, passionate, and witty young man whose advocacy and spirit continue to inspire.

For the Illawarra Shoalhaven team, Bodhi highlighted the important role that clinicians can have in facilitating patient choice and his positive impact on their practices and approaches and lessons learned will be long-lasting. Like AYAH, they feel privileged to have known and cared for Bodhi and his family.

Bodhi’s parents are now strong advocates for equitable access to palliative care. Stay tuned for an announcement of a special event to celebrate National Palliative Care Week (11 – 17 May) that they will be keynote speakers at.

For more information on AYAH, click HERE.