Lilly’s story

Lilly, at just 10 days old, started having breathing difficulties, seizures and needed to be resuscitated.

Kimberley and Philip, who had become parents for the first time less than two weeks earlier, rushed their baby girl to the Emergency Department of Prince Charles Hospital early in the morning. By that afternoon, Lilly had suffered multiple seizures, been given oxygen, resuscitated, intubated and transferred to the Intensive Care Unit at the Children’s Hospital.

“Even though Lilly had many tests, they were also coming back negative,” Kimberley recalled.

“Doctors were not certain of what was wrong with Lilly, if she would survive, or how she could be treated other than with morphine, seizure medication and antibiotics.

“After all avenues were exhausted she tested positive for parechovirus and the diagnosis was confirmed four days after admission.”

In one way, Kimberley and Philip were relieved to know what was affecting their baby’s tiny body, but the diagnosis brought even more concerns.

“The virus was not widely researched, it is extremely rare and there is no cure."

“Thankfully Lilly did come off life support and her breathing became stronger, so she was able to return home in time for Mother’s Day.”

At about 18 months old, Lilly started suffering respiratory distress monthly with each cold requiring emergency treatment at Queensland Children’s Hospital. She was diagnosed with bronchiectasis.

Then at three years old she was diagnosed with a rare autoimmune condition.  This does not have a known outcome and has been exacerbated by all of the ongoing infections. By the time Lilly was three-and-a-half, she began monthly infusions of intragam – part of an immune replacement therapy – at Queensland Children’s Hospital.
In February this year Lilly developed epilepsy and has required frequent emergency treatment at Queensland Children’s Hospital.

Lilly’s medical issues are complex, but she has made significant progress since then – no longer suffering panic attacks when trying to sleep or strugging to hear. The bubbly four-year-old has also started at daycare two days a week and is enjoying playing with her friends and is aiming to start Prep next year.

Lilly has had more 44 admissions to hospital, 70 procedures and 277 appointments.

Much of her young life has been spent at hospital. During that time, Lilly has loved pet therapy and has a favourite dog – gentle giant Nanook. Lilly also loves to attend events where she can show off her ballet moves and enjoys riding her new adapted bike at home when she is not dancing to The Wiggles or practicing her counting to 10 – in four languages.

Lilly and her family are now focused on speech therapy and helping Lilly build her motor skills capacity.

“Lilly continues her path of a miraculous recovery and celebrating many milestones,” Kimberley said.

“We are very grateful to the wonderful staff of the hospital, as they supported us in the darkest hours and continue to do so. Lilly could not have received better treatment.”

Lilly is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Lilly’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.