A lifetime of love in just six months.
- Perth Children's Hospital Foundation
A lifetime of love in just six months.
- Perth Children's Hospital Foundation
Remembering Elfy, her cheeky smile and why Sandcastles matters to families like Nav's.
When Nav and his wife were partway through their pregnancy, they received devastating news.
Their daughter had a severe and life-limiting heart condition. Multiple cardiologists told them there was little that could be done and that she might survive only a few hours after birth.
Elfesiah, known as Elfy, was born with a series of complex heart abnormalities that made her condition extraordinarily rare. Her heart was upside down and sat on the right side of her chest instead of the left. She was born with just one pulmonary valve and had two holes in her heart.
“She was almost one in a million,” Nav said.
The day Elfy was born, they were prepared for the worst.
“She came out so quick, less than a minute,” Nav said. “She was brought to the ICU, and she was still alive. We were so happy to see her.
“Then two hours passed, and she was still with us. One day passed, then three days, then seven days. The doctors and nurses couldn’t believe it.
“We did not sleep. All we knew was our baby was here, and we might not get a lot of time with her, so we’re going to spend as much time with her as we can.”
After a month, Elfy continued to surprise everyone around her.
“She was such a happy, smiley baby. You could never tell she was sick,” Nav said. “She was growing so healthy and so smart.”
She recognised her family, communicated with just a look and lit up every room with what Nav describes as “the cheekiest smile ever”.
“There was nothing better,” he says. “Nothing.”
Photography by Kylie Plunkett, who generously donated her time to capture the moment.
More than end-of-life care.
When people hear palliative care, they often think about death and dying. For many children, the reality can be very different.
Paediatric palliative care can begin at diagnosis and continue for months or even years, with a focus on comfort, symptom management, emotional wellbeing, respite and helping families make the most of the time they have together.
It’s this kind of care, and the needs of families like Nav’s, that Sandcastles (Boodja Mia), WA’s first purpose-built children’s hospice, is designed to support.
For Nav, caring for Elfy meant learning to understand every small change in her condition. When she struggled to breathe, he would hold her against his chest.
“I’d regulate my breathing for her. Eventually she would start breathing how I’m breathing. I needed to stay calm, because if I panic, she’d feel it,” he said.
Despite the challenges she faced, Elfy continued to defy expectations. Against all odds, she reached six months of life surrounded by the people who loved her most.
But on the day she reached that six-month milestone, Elfy suffered a stroke.
“She’s usually such a happy baby, but she looked different. She was struggling.”
Nav and his wife rushed her to hospital, desperately hoping she could be saved. Just steps from the Emergency Department, Elfy passed away in Nav’s arms.
Today, Nav honours her memory by saving throughout the year to put together care packs for families spending Christmas in hospital. Even though Elfy is gone, Nav says he still carries her with him every day.
“She didn’t just come here and die for nothing. She’s everywhere. It’s remembering what she taught me. She came here and changed me completely.”
For Nav, six months with Elfy was a lifetime of love, lessons and memories. Stories like theirs are why Sandcastles exists: to give families caring for a child with a life-limiting condition more opportunities to spend meaningful time together, find support, comfort and respite while creating memories that last forever.
Seeing Sandcastles for the first time, Nav was struck by how different it felt from a hospital.
“My first thought was wow. I would stay here and holiday,” he said. “I really wish we’d had this when Elfy was here. It could have been life changing for us.
“It feels so classy, and there’s just a feeling of peace throughout. Everything has been so thoughtfully designed, with warm colours and a calm feeling – which is what parents really wanted.”
More than 2,000 children in WA have a life-limiting condition. Until now, families have had only two options: care at home or care in hospital. Sandcastles will provide a third option, offering medically supported respite, symptom management, end-of-life care, and bereavement support in a warm, home-like environment.
Nestled amongst the bushland of Swanbourne, Sandcastles is designed to support children with a life-limiting condition from across WA and give families something incredibly valuable: time together.
With accessible bedrooms, welcoming family and play spaces, and specialised amenities including a hydrotherapy pool and large accessible bath, Sandcastles will provide expert care in a setting that feels more like a home than a hospital, giving WA families precious opportunities to rest, reconnect and spend meaningful time together.
Sandcastles (Boodja Mia) is set to open in late 2026.
Find out how you can support WA’s first children’s hospice at sandcastles.org.au