Jackson & Shelby
Siblings Shelby and Jackson inspire everyone they meet with their strength and can-do attitudes.
At just 15 and 12 years of age, they courageously face health battles many adults would struggle with.
Both Shelby and Jackson have Neurofibromatosis Type 1 - a rare genetic disorder which affects them in different ways.
Jackson has an intellectual disability, autism, and a heart condition that will require future surgery. He has scoliosis which is closely monitored to ensure it doesn't put pressure on his heart or lungs. He also has two optical gliomas (tumours) which are slowly taking away his sight.
"Before he'd turned three, Jackson almost died seven times," mum Kirsty says.
Shelby has a large inoperable tumor on her head and lives with severe migraines and constant nerve pain. She also has an intellectual disability and has a five centimetre inoperable hole in her skull.
The children have been patients at the Women and Children's Hospital in Adelaide for almost a decade - the world of surgery, anesthetics, tests, scans and teams of specialists are all they have ever known.
"I feel like their illness has stolen their childhood as they have had to grow up quickly to deal with ongoing health challenges," mum says.
With two younger children to care for as well, Kirsty and dad Paul say nothing in life is simple.
Our whole existence revolves around our children's needs. I am unable to work as hospital and appointments make it impossible. Both Paul and I struggle with being overloaded with stress and learning new ways of parenting. Small, incidental tasks like putting on shoes is complicated for us.Shelby & Jackson's mum, Kirsty
She said despite all the challenges life throws at them, they have found positive moments to treasure and their kids hardships has taught them to appreciate every small moment as they don't know if that will be the last time they celebrate together as a family.
The family also relies on the positivity that Starlight brings to help them cope with hospital treatment.
I watch my children's worries and fears fade away as soon as they walk into the Starlight Express Room. Their confidence shines through and their bodies relax. You can see it happen before your eyes - their moods shift after spending time in the room.Shelby & Jackson's mum, Kirsty
The Starlight Express Room also gives Paul and Kirsty breathing space to process medical updates while the Captain Starlights distract the children – including their younger two who love that there’s somewhere fun to play in hospital.
The illness affects the children in different ways emotionally. For Jackson one of the hardest parts is the fear - not understanding what's happening to him, scary words like chemotherapy, and not knowing when he can return to school.
For Shelby, it's the heartbreaking uncertainty of what her future holds, seeing other kids struggle in hospital, and not feeling like she fits in with children outside of hospital.
Children are not built with the coping tools for such big challenges. To have the stress relief of fun and laughter through Starlight helps them cope - it's so beneficial to our mental health. In those distractive moments, the hospital feels like it's in a different universe.Shelby & Jackson's mum, Kirsty
"From the bottom of my heart - thank you. You have changed our lives. The moments Starlight provides are priceless and give our family a much-needed recharge."
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