A Little Piece of Me - Lili's Story

30 Nov 1999

Lili was just 15 months old when she suffered her first seizure.

“She just started convulsing. It was so bad, I thought we lost her in that very moment,” explained Lili’s mum Sara.

First-time mum Sara was in absolute shock. How had her happy, healthy little girl ended up here?

Hoping it was just a one-time thing - a reaction to an illness, a temperature, anything - Sara tried to push it to the side. But it wasn’t long until little Lili suffered her second and third seizures.

She was later diagnosed with epilepsy, and a number of tests followed, trying to determine what exactly was going on.

“I really had no idea what we were in for. I thought children diagnosed with epilepsy were prescribed some medication and that was that.”

Unfortunately for Lili and single mum Sara, that was far from the case. As Lili’s condition deteriorated, she was admitted into The Children’s Hospital at Westmead. Here, Sara and Lili became known as ‘frequent flyers’ with one hospital admission lasting more than 11 months.

Over the next three to four years, the incredible teams at The Children’s Hospital at Westmead and Sydney Children’s Hospital, Randwick tried everything they could. From treatments, to trials, to brain surgery, but nothing seemed to work for Lili. Her seizures were resistant to all medications prescribed.

A little piece of me Lili

“We tried everything. We had teams in almost every department fighting for her, but she wasn’t responding. She just went from bad to worse.” 

Lili lost the ability to sit up, stand, take steps, hold things, speak, and eat on her own, but despite everything, she still showed incredible strength. At just a few years old, she inspired everyone around her, showing incredible love and determination, constantly surprising everyone by always fighting back. 

“I watched my beautiful little girl come out of a seizure, look at me, smile, hold my hand and kiss me to reassure me that she was ok, only to fall asleep moments later to recover from what her little body just endured.” 

Lili’s hospital room quickly became her own little bedroom, and the staff that cared for her became her family. 

“The nurses make your hardest days bearable, and they remind you to make the most of each and every moment.” 

No matter what Lili went through, she had the incredible ability to find strength and continued to show everyone just how amazing she was. With her various hairstyles, stylish dress sense and fun accessories, Lili quickly became known to all as Miss Lili - one of the best dressed children in hospital. 

“They loved her, they looked after her and we felt supported there.” 

In July 2018, Sara was given the devastating news that there was nothing more the doctors could do.  

“I didn’t want her passing away in hospital because she grew up there, so I decided to take her to Bear Cottage, the only children’s hospice in NSW.” 

It was at Bear Cottage that Lili got to spend her final days. Together, Lili and Sara made the most of every moment. Between art classes, music therapy, the beach and pamper days, Bear Cottage gave Sara and her family the opportunity to experience the beautiful moments and spend Lili’s final days together, surrounded by love. 

“The beautiful nurses at Bear Cottage went above and beyond in preparing us for our final goodbyes.”  

On 27 July 2018, at just over four years old, Lili took her final breath and passed away in her mother’s arms.  

“No matter what Lili went through, she was so amazing. She taught me the true meaning of love, she taught me strength, she taught me resilience and she taught me the true meaning of bravery and courage.” 

This July marks the four-year anniversary of Lili’s passing, and so Sara decided to be involved with Sydney Children's Hospitals Foundation Art Program’s A Little Piece of Me project. 

“Taking part in this amazing project couldn’t come at a better time. It’s a way to keep my beautiful Miss Lili’s memory alive.” 

This collaborative art project between artist Andrew Christie, Sydney Children’s Hospitals Foundation Art Program and Sydney Children’s Hospitals Network’s Palliative Care teams provides families with a portrait they can treasure forever. 

Made up of hundreds of tiny images, Lili’s portrait tells her life story. It captures her incredible style, her gorgeous smile, and her tenacious personality. 

“It’s one portrait that perfectly sums up her whole life. Every single photo has a story, a memory, and a meaning behind it. Together they tell her story, from the very beginning to the moment I laid her to rest.” 

“All I want is to keep her beautiful memory alive, so the more I talk about her, the more I do things in her honour, it makes me happy and it really helps me with my grieving. I am so thankful and grateful to be a part of Sydney Children's Hospitals Foundation Art Program’s A Little Piece of Me project.” 

A Little Piece of Me is on display at Sydney Children’s Hospital, Randwick, The Children's Hospital at Westmead, John Hunter Children’s Hospital and Bear Cottage until the end of August. 

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