Emily

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EmilyAfter a big week at school with choir and dance club performances, ten-year-old Emily was pretty tired.

Given her daughter's busy schedule, mum Shahn wasn't too worried that Emily wasn't quite herself.

But nothing prepared the family for what lay ahead.

Emily was admitted to hospital where doctors discovered swelling on the brain.

Tragically, an MRI revealed a tumour and Emily was diagnosed with a rare form of brain cancer.

Shahn said the feelings of despair and sadness were overwhelming.

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The diagnosis shocked us to our core. We felt helpless and frightened.
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Emily's mum, Shahn

Emily had emergency neuro surgery at John Hunter Children's Hospital to remove as much of the tumour as possible. She remained in hospital for 159 days.

Emily during treatment

Every aspect of family life was impacted. Shahn had to leave her full-time job to live at the hospital with Emily.

The financial and emotion strain was unimaginable.

Dad Brad had to juggle his time between working, caring for their son Mason, and being at the hospital as much as possible to see Emily and Shahn.

It was hard on Mason, who was only five to make sense of what was happening to his family and his sister wasn't as she was before.

Emily and her brother

Thankfully amid all the pain and sadness of hospital, the family had Starlight's hospital services.

Captain Starlight brightened Emily's day and gave her something positive to look forward to during her agonising months in hospital.

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Being able to see your child smile during such a difficult time helped us deal with it emotionally. Starlight made our hospital stay easier, stopped the boredom and more importantly, stopped Emily falling into depression.
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Emily's mum, Shahn

Sadly, Emily's acquired brain injury has left her paralysed resulting in her now being wheelchair-bound.

Her mum said visiting the Starlight Express Room where Emily made new friends helped her see she was not alone.

Emily with Captain Starlight in the Starlight Express Room

"Having a place to be able to forget your concerns and be normal and interact with other kids is essential to the recovery of everyone involved," Shahn says.

When she was feeling well enough Emily never missed a chance to visit the Starlight Express Room to laugh and play which helped take her minds off all her treatments.

Captain Starlight even helped put on a special birthday party for Emily in hospital. And in Emily's words it was "the best birthday EVER!"

Emily's birthday party in the Starlight Express Room

The Starlight Express Room helped Brad and Shahn enjoy vital respite too.

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Starlight has given us some normality back while in hospital. The fun, bubbly and energetic atmosphere was the one thing Emily looked forward to which in turn, gave us as parents that small bit of relief to recharge our batteries.
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Emily's mum, Shahn

Emily returning to schoolFinally together again at home, Shahn said they are still coming to terms with their new life. Mason is slowly re-connecting with his older sister, and Emily has slowly started back at school.

"It’s been a huge lifestyle change for us to adapt to life with a disabled and impaired child. We've had a huge decrease in income along with a large increase in expenditure to accommodate Emily's disability."

Emily still heads to John Hunter Children's Hospital every fortnight for ongoing tests and treatment.

Shahn said knowing Starlight is there makes the world of difference to their ability to face every next medical hurdle.

"Without Starlight, Emily would have had nothing to look forward to and the increased stress and worry would be detrimental to everyone's mental and emotional state," she said.

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Thank you for supporting a program that's been a life saver to me and my family. Having a place to be happy and be able to switch off from all the hospital stuff, gave us the strength as a family to get through every day.
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Emily's mum, Shahn
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