Some stories unfold not in books, but in hospital rooms, family living rooms, and the quiet strength of a child’s smile. For Billee and her family, one portrait has become a lasting symbol of love, connection, and everything they’ve faced and overcome together.

As part of A Little Piece of Me, an annual photographic memory making project from Sydney Children’s Hospitals Foundation’s (SCHF) Art Program, Billee’s portrait will soon take its place on the walls of Sydney Children’s Hospital, Randwick alongside many others capturing the unique identities and journeys of children with life-limiting conditions.

Diagnosed with lissencephaly at just six months old, Billee has faced more medical challenges than most people do in a lifetime. The rare congenital condition, which affects the way her brain formed, means that while Billee is 17 years old, developmentally, she functions at around three to five months of age.  

Over the years, she has battled epilepsy, chronic lung disease, and respiratory issues that have seen her in and out of intensive care. Yet none of these diagnoses come close to defining who Billee is. 

“She’s beautiful,” says her mum, Kerri. “She’s happy, she smiles, she laughs. Her world is small, but it’s full of love.” 

And love is the thread woven through every photo chosen to create her portrait. The final piece, assembled using hundreds of images, captures the faces of the people and the moments that have shaped Billee’s life. Her devoted sisters. Her grandparents. Her little nephew and niece too. Her beloved therapy dog, a 12-year-old Labradoodle trained to comfort and calm her. The doctors, nurses, teachers, and support workers who have stood by her side since she was a little girl. 

“It’s a piece of everyone who’s loved her and helped her over the years,” says Kerri. “This portrait is a way of honouring all of them and celebrating Billee.”

For Kerri and her family, participating in A Little Piece of Me has been a powerful way to reflect on their journey, not just as Billee transitions into the adult healthcare system, but as they close a chapter on 17 years spent at Sydney Children’s Hospital, Randwick. 

“The hospital has become a second home,” Kerri shares. “We’ve had amazing care from every team from respiratory, gastro, neuro, physio, you name it. And this portrait… it’s like the final piece of that journey. A way to tie it all together.” 

Like many families who fear the implications of the word, Billee’s family were initially hesitant to engage with the Palliative Care Team.  

But after a particularly serious ICU admission last year, they turned to the team and haven’t looked back. 

“We were scared of what it meant,” says Kerri. “But they’ve been amazing, not just for Billee but for all of us. They support her quality of life. It’s not about the end. It’s about making the most of every day.” 

Through A Little Piece of Me, Billee’s story will be shared with thousands of hospital visitors, supporters, and families. 

“It means everything to have her story told,” says Kerri. “She deserves to be seen, and if by sharing her journey we can help other families feel seen too, then that’s everything.” 

SCHF’s A Little Piece of Me project is one of many programs made possible by generous donor support. Since 2018, the exhibition has helped almost 400 families preserve their memories and celebrate their children’s lives through art.

“Spending a lot of time in a children’s hospital is definitely an eye-opening experience. I think many of us go about our everyday lives and don’t ever think about the battles some families are going through until you are really exposed to it. Seeing the fight, determination and resilience in all these amazing, brilliant kids and all the different emotions their families go through is both heartbreaking and heart-warming.

“Siblings of seriously ill children have a very different childhood to most and they definitely deserve a mention. They spend a lot of time at hospital bedsides while us parents juggle responsibilities and play tag team with one parent staying at the hospital and the other keeping life at home running smoothly (which can at times be almost impossible). There are a lot of sick kids out there with families who are just trying to do their best, that need your support. Your kindness and generosity will help to make a huge difference in their lives,” explains Kerri.

By supporting Sydney Children’s Hospitals Foundation, you help create a hospital experience where children like Billee and their families are honoured, celebrated, and remembered through lasting memories.

Your generosity brings powerful programs like A Little Piece of Me to life.