Sahara's family love their adventures - from paddle boarding, long walks on the beach or going to explore a new park. Sadly, since February last year those adventures have stopped. Instead, their lives have been consumed by hospital and treatment, fear and worry.
Seven-year-old Sahara had been unwell, suffering regular headaches and violent bouts of vomiting. The usually outgoing, karate-loving kid was not herself so her mum took her to the doctors.
Nothing prepared them for the news that Sahara had a brain tumour.
A million words could not describe the complex feelings in that moment of diagnosis. I was in a room with six medical staff trying to comprehend that our little girl was so terribly sick.Michelle, Sahara's mum
Sahara was diagnosed with Medulloblastoma, and as a result has Cerabella Mutism. She also suffered a minor stroke.
From the moment of diagnosis until May, hospital was Sahara's life.
It was devastating for the close-knit family of five. Michelle and dad Jamie split their time to be by Sahara's side in hospital, while also trying to be around for their older children Caitlyn and Tim. Every aspect of family life changed with the demanding schedule of regular stays in hospital.
"I had to take unpaid leave for 13 months, as I work in the evenings for a supermarket. I couldn't be her everything then work five or more hours per night," Michelle said.
Sahara now relies on a wheelchair to get around and is learning to walk with a walker. She battles fatigue and can struggle to communicate.
Sahara misses out on all the things she used to love doing, like playing with friends after school, swimming or seeing a movie with her big sister. Sadly, staying at her grandparent's house or a friend's place is now out of the question.
When she's in hospital she also dearly misses her beloved pets at home.
Getting out and about can be extremely challenging. The family have to factor in Sahara’s fatigue, ongoing appointments and be conscious of her medical needs and the physical environment.
"As a family we would go out and meet up with friends, go jet skiing or bush walking, now we don't do anything like that," Michelle said.
Thankfully there have been some moments of happiness helping Sahara and her family cope with the gruelling rounds of treatment.
When she's in hospital Sahara can escape to the Starlight Express Room and have fun with art, craft, games and movies.
We cannot visit the hospital without visiting the Starlight Express Room. It's one of the only times Sahara gets to go anywhere fun and where people don't stare or ask questions about her health.Michelle, Sahara's mum
Sahara loves that there are so many different things happening in the room. Captain Starlight (who she describes as the 'coolest ever'!) always asks after Sahara's cats and dog, and that helps distract her and lifts her mood. Sharing cat stories and the adventures of cats on Planet Starlight always brings a smile to her face!
Michelle said having the Starlight Express Room and Captain Starlight also helped give her a break from the mental anguish of caring for a sick child in hospital for months on end.
"When days were long, boring and painful, there was always something to look forward to. It gave me a few minutes to just breathe and that break was very much needed."
Starlight Express Rooms are a vital haven for families like Sahara's. Importantly they are open to everyone and Sahara's mum said: "It's beautiful to see no one excluded in the Starlight Express Room, and each person is made to feel welcome."
Starlight Express Rooms can only stay open thanks to the generosity of Starlight supporters.
One sick child's smile is worth more than money can buy. If you can change a frown to a smile and let kids believe in dreams and it takes away their anxieties, then nothing else matters. Captain Starlight would not be able to achieve those smiles without supporters.Michelle, Sahara's mum
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