For more than a decade, Giulia Lake (Jules) has navigated a world few parents ever expect to enter. At just one year old, her daughter Téa was diagnosed with a rare condition that would change everything. Yet while many assume paediatric palliative care is focused on end-of-life care, Jules knows that, beneath the surface, palliative care is about so much more than the end. It’s about advocacy, guidance, and ensuring Téa has the best quality of life possible.

A pivotal moment

Jules recalls when their family first came into contact with paediatric palliative care, a moment that initially filled her with uncertainty. “We actually got in contact with them when Téa was about two or three,” Jules explains. “We were at a funeral of one of Téa’s little friends she met in hospital, and one of the nurses we had become friendly with, who had recently transitioned into palliative care, approached us. She suggested we look into it.”

At first, Jules was hesitant. “Up until that point, I’d only associated palliative care with end-of-life care. It was a bit of a scary thing,” she admits. “But when we did reach out, they were excellent at explaining how paediatric palliative care is different, especially in comparison to adult care. They reassured us about how it could benefit Téa and our family—not just in terms of medical support, but in providing resources and emotional guidance.”

The diagnosis that brought clarity

“Téa has a very rare genetic condition called microcephaly capillary malformation syndrome,” Jules says, explaining Téa is the only person in Australia with this condition, with only 18 known cases worldwide.

The diagnosis came after a dermatologist stumbled upon a research paper in Washington looking for children with specific symptoms. Téa’s unusual birthmarks, small head, and seizures matched the criteria, leading to blood tests for the family, and about six to eight months later, the official diagnosis was confirmed.

Receiving a diagnosis brought some clarity, but it didn’t change the reality of Téa’s complex medical needs. Managing her condition meant navigating a healthcare system that often felt overwhelming—which is where palliative care became a crucial part of their journey.

Beyond medical support

Téa’s journey with palliative care has been one of evolution. In her younger years, she was in and out of hospital every few weeks. As she grew, things stabilised, but there were still terrifying setbacks—like a month-long stay in ICU last year. Through it all, palliative care adapted. “The way they supported us changed completely,” Jules explains. “They were with us every single day, helping us make decisions, supporting us emotionally. They weren’t just focused on Téa, but on all of us.”

Jules describes the palliative care team as a kind of “gatekeeper,” the first point of contact for anything Téa needs. They advocate for her care, filter information between specialists, and push for interventions that might have otherwise been overlooked. “We knew something wasn’t right [last year], but the doctors kept saying everything looked fine,” Jules recalls. “Palliative care backed us, pushed for further investigations—and they were right.”

Caring for the whole family

Palliative care isn’t just about medical support—it’s about holistic care for the entire family. Jules explains that she and her husband, Danny, process things differently, and the palliative care team recognises this, tailoring their support to meet the needs of each family member. This approach also extends to Téa’s older brother, Jamie, who struggled with anxiety around death in his early teens. “His school noticed it, and the palliative care team stepped in,” Jules says. “They worked with the school social worker to ensure he received the right support, and it made such a difference.”