Six-year-old Adele grins from ear to ear as she proudly shows off her new trampoline tricks.
For her mum Bec and dad Jason, it means the world seeing their little girl so happy - especially given everything she’s been through at such a young age.
In just six short years, Adele has had five open heart surgeries - two this year alone.
Adele’s medical conditions were discovered during Bec’s pregnancy when scans showed a congenital heart defect.
Shortly after she was born, further testing revealed the complexity a range of by Adele’s health conditions.
At just three weeks old, Adele was diagnosed with Alagille Syndrome and Biliary atresia – rare conditions in babies affecting the bile duct and liver, as well as a congenital spleen condition known as Polysplenia.
“It was heartbreaking seeing our tiny baby hooked up to all those machines in hospital,” Bec said.
Adele was later diagnosed with asthma and hepatopulmonary syndrome - a serious complication of liver disease that affects the lungs.
Hospital has continued to be part of the family’s life. In addition to her heart surgeries, Adele has undergone multiple operations including a Kasai procedure on her liver, exploratory surgeries and needs ongoing medication and regular tests.
Bec said while Adele is an outgoing, resilient child, hospital and treatment takes its toll.
“The hardest part for Adele is the trauma of all the medical interventions and the constant blood tests and physical assessments. She just wants to be as well as she can so she can attend school and be with her friends,” mum said.
The challenges of hospital make it almost impossible for the family of to plan ahead.
“We now take life day by day because we have so many frequent and unplanned hospital visits. It also impacts how much time we can spend with other our children,” Bec said.
In hospital Adele is often confined to her room for long stretches of time recovering from surgery and misses time with friends and family.
Amid so much fear and uncertainty, Starlight has brought moments of happiness that helped ease the pain and worry.
Bec said they first discovered Starlight when Adele was a toddler and the Captain Starlights instantly put a smile on her daughter’s face.
“Without the Captain Starlights, Adele and my opportunities for a good giggle together would be unlikely. They brighten the gloomiest days in hospital.”
When she’s well enough Adele loves going to the Starlight Express Room to play and take a break from the wards.
Her favourite things to do are all the crafts and creative activities that spark her imagination and bring her so much happiness.
“The Starlight Express Room gives us both something to look forward to everyday in hospital. It’s a great distraction from all the treatments and the challenges of life in hospital,” Bec said.
Adele will face further surgery and treatments to continue to manage her conditions. She is currently recovering from her recent heart surgery and will soon undergo liver transplant surgery.
Bec said with her daughter’s treatment ongoing, it’s so important that Starlight is there in hospital for families with a seriously ill child.
“When kids are isolated in a hospital room, having fun and playing is paramount. Seeing Adele’s happy, cheeky smile is really contagious and never fails to make our day. Starlight makes our hospital days easier and it’s heartwarming to see the impact the Captains have - always bringing a laugh and a smile even on the toughest days.”
