A keen reader, 14-year-old Willow always has a book or two on the go. She loves drawing and composing music on the piano and has won numerous school awards for her artistic talents.
When she’s not pursuing her creative passions, she loves being outside bushwalking and spotting wildlife.
Up until two years ago, Willow had been fit and healthy. Her mum Paige first noticed something amiss while they were having a family dinner.
“I suddenly noticed that the whites of Willow’s eyes looked slightly yellow around the edges,” Paige said.
Not taking any chances, Paige took Willow straight to the local hospital.
After blood tests and an overnight stay, Willow was sent home with medication and needed to return to hospital in a week for further testing.
Sadly, those tests showed significantly worse liver functioning and Willow was diagnosed with liver failure.
There was no time for Paige to process the shock. “As soon as we were told it was liver failure, we raced home, packed our bags and drove straight to the children’s hospital.”
At hospital, Willow's condition deteriorated rapidly. Her blood was not clotting and the ammonia in her system was starting to affect her brain. Paige remembers the fear being told that her daughter may need to be put on life support.
“Willow's condition was dire. A liver transplant was the only thing that could save her life.”
Just 12 days after her mum had first noticed the yellow in her eyes, Willow was undergoing life-saving transplant surgery.
Willow had a pioneering type of liver transplant that allowed her to keep a portion of her own liver, which once recovered, meant the donor liver could ultimately be removed.
The year following Willow’s transplant surgery was extremely tough. The anti-rejection medication had gruelling side effects. Willow suffered from insomnia and mood swings, she struggled to breathe and was unable to participate in all the physical activities she loves.
“During that year, I reduced my work hours by more than half to try and manage our new life as ‘medical parents.” Willow’s mum said. “Navigating 30+ tablets a day, keeping up with all the tests and hospital appointments was a full-time job.”
Willow’s wound required multiple revision surgeries and yet more time in hospital. She missed a large portion of her first high school year, and every hospital visit filled her with worry and anxiety. Her immune system was at risk, so she was in isolation for long periods of time, unable to socialise. It was hard for dad Adam and younger siblings Hazel and Otis to be apart from Willow.
“Emotionally, the fear of finding herself back in hospital and needing more surgery was always lurking in the back of her mind. Willow is especially anxious of all the blood tests – it’s an agonising wait until we can breathe a sigh of relief once we know everything is ok,” Paige said.
To help Willow cope with the fear and loneliness in hospital, Starlight brought fun and entertainment to her hospital ward, keeping her spirits up to get through every next test and procedure.
Willow loved playing trivia and memory games on Starlight TV when she was stuck in bed. As she was too unwell to visit the Starlight Express Room, the Captain Starlight came by to say hi with games and bad ‘dad jokes’ to bring a smile to her face.
“Kids in hospital are so brave and working hard to get better and go home. Most of their day is spent fearing the next needle, blood test, or yucky medication. Starlight is the joy in a hospital kid's life, it’s so special” Paige said.
Thankfully, Willow’s transplant surgery was successful and just over a year later, the donor liver was removed.
“Starlight helps take kids’ minds off hospital life and gives families something to look forward to,” mum said.
After so much pain and sadness, Willow had something very exciting to look forward to when she was granted her Starlight Wish to go to Alice Springs for the Parrtjima Festival of Lights.
“Willow is a very proud Aboriginal girl. She knew pretty quickly that she wanted to a wish where she could experience culture, and the Northern Territory was high on her list of places she wanted to visit.”
Parrtjima celebrates all the things that Willow loves - music, art and storytelling. Her wish also gave the family important time together again and for Willow to spend time having fun with Hazel and Otis away from the world of hospital.
“Our trip to the NT was a dream,” Paige said. “Words can’t really capture how incredible our experience was. So much light and joy, from what was likely the most awful time in our lives.”
Willow is continuing to pursue her artistic endeavours and is performing in Starstruck later this year and had a digital artwork showcased as part of Reconciliation Week at her school.
Now, thanks to to the support of Virgin Australia, Starlight's official Airline Wishgranting Partner, Willow and her family are about to embark on an unforgettable trip to Uluru. Willow is excited to further connect with her rich history and culture and experience the landscape, art and natural beauty of Uluru with her family by her side.
