Lilli Unsworth in Melbourne Childrens Hospital awaiting heart transplant

A young Gympie girl has marked her 11th birthday in heartbreaking fashion after a trip to the emergency room turned her and her family’s world upside down.

Lilli Unsworth has been in hospital since July 2022 after suffering 2 cardiac arrests and a septic infection.

When young Lilli Unsworth went to the emergency room at Gympie Hospital with a suspected chest infection, her parents never expected their young family’s lives to be turned upside down.

On Monday 10 October, 2022, she celebrated her 11th birthday while in a critical condition in a Melbourne hospital.

Her mother, Freyja Jennings said it has been a long road to get to this point, which started before Lilli was even born.

Twenty-one weeks into Freyja’s pregnancy, Lilli was diagnosed with a congenital heart defect, which ended up resulting in five surgeries before she was even one year old.

Lilli celebrated her 11th birthday on October 10, 2022.

On Wednesday July 6, 2022, Lilli was taken to Gympie Hospital by her mother.

At the time, they only suspected a chest infection. As she later found out, Lilli had sustained a heart attack.

Lilli was transferred to Brisbane Children’s Hospital, where in the early hours of Thursday morning, she went into cardiac arrest – twice.

Freyja likened the experience of cardiac arrest to an exorcism.

“Her whole body went stiff and blue,” she said.

“I just started screaming.”

After seven surgeries over 14 hours, Lilli was finally reunited with her family.

She was on and off life support for 15 days.

Shortly after coming off the life support, she fell ill once again, this time due to her body becoming septic.

Doctors were forced to remove 15 sq cm of the young girl’s bowels in an emergency surgery. She also sustained nerve damage to her left leg and foot.

Lilli Unsworth's family visits her on a sunny day in hospital.

While recovering and relearning how to walk, Lilli once again became unwell with a virus, which eventually led to heart failure.

She was flown via air ambulance to the Melbourne Royal Children’s Hospital on September 22, 2022.

Lilli’s parents and her two young siblings Oakley, 8, and Lumia, 3, have been forced to move to Melbourne suddenly.

Doctors expect Lilli to remain in hospital for at least another year while she builds enough strength for a heart transplant.

Freyja said it has been a heartbreaking ordeal for the family.

“It’s been a journey that we’ve been on for the last 11 years, but the last six months have really been the absolute hardest,” she said.

“No one thought she was going to make it.”

“They were saying ‘we can’t see a way out’, it’s okay if you decide to [turn off her life support].”

Lilli Unsworth is a talented dancer and gymnast and won't be stopped by her heart condition.

Lilli’s father Jamie’s cousin Sandy Williams has started a GoFundMe campaign to support the young family.

The campaign has already raised more than $8500, including one anonymous donation of $5000.

Sandy said the ordeal has been extremely tough on the family.

“Freyja and Jamie have both had to leave their jobs, their home and restart their lives in Melbourne,” she wrote on the campaign page.

“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.”

Lilli poses with her stuffed animals in the hospital.

Freyja said she was extremely grateful for the community support.

“There’s no words I can put it into on how much of stress reliever it actually is,” she said.

“Knowing that we can be there for Lilli through this journey and not have to worry too much about everything else happening around us – we’re deeply grateful.”

You can support Lilli and her family here.

Originally published as Lilli Unsworth in Melbourne Childrens Hospital awaiting heart transplant