Help bring Lilli and her family home

Lilli unexpectedly lost her battle on Friday 14th October 2022. She fought till the very end and was surrounded by her mum, dad, brother and sister - Oakley and Lumia and her Nana and Poppa. She is flying high with the angels now. Freyja and Jamie are now working on bringing their beautiful girl home to Queensland.

We have set this up on behalf of Freyja and Jamie to help support them during this difficult time - Thank you, Sandra Williams

In the early hours of Thursday morning on July 7th 2022 Lilli, 10 year old went into Cardiac Arrest, twice. She was fortunate enough that she and her mum had arrived in Brisbane at the Children’s Hospital Wednesday night with a suspected chest infection. Being here meant that they could stabilise her, she was then put on life support.

On Sunday July 10th 2022 she went in for surgery, 14 long hours before mum and dad, (Freyja and Jamie) got to see her again. Lilli was then slowly weaned off life support and starting to communicate again. A few days later she became very unwell once again, Lilli’s body was becoming septic and again, she was rushed in for surgery to find the cause - 15cms of her bowel was removed and fitted with colostomy bag.

Lilli also received nerve damage to her left leg and foot and was in the process of learning to walk again as well as regain strength throughout her whole body.

After 4 weeks in PICU Lilli got moved to the ward where she remained stable. 4 weeks later she became unwell with a virus and a week later went back into heart failure and moved back into PICU.

From there arrangements where made and on Sunday 18th September 2022 she and Freyja were flown via air ambulance to the Royal Children’s Hospital Melbourne where she was once again put back on life support in preparation for more stabilising surgeries.

On Thursday 22nd September Lilli went in for an LVAD device implant to try and move her off the life support machine. Lilli is in a stable yet very critical condition.

As a result, Lilli’s Mum, dad and siblings, have had to relocate to Melbourne suddenly. They have been advised by Lilli’s medical team that they could be there for a year or more as Lilli receives the treatment she needs.

Freyja and Jamie have both had to leave their jobs, their home and restart their lives in Melbourne with Oakley and Lumia. Over the next weeks and months, the focus will be, to be there for Lilli as she goes through her treatments and healing process. At the moment, every day brings new challenges, challenges that mum and dad need to face with Lilli, so that they can bring her home when she is well again.

The plan is to get her strong enough to receive a heart transplant. The process is a long one.