The life of Wallsend's 11-year-old Emily Chesson has rapidly changed over the past six months, after doctors at John Hunter Children's Hospital found an extremely rare tumour growing in her brain.
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"Emily was a typical 10-year-old. She played clarinet and dance," her mother Shahn Green said.
"She had a massive week of performances at school. And I noticed her right eye was closing. I just thought she must be really tired.
"I booked an appointment at the optometrist on the 30th September. The optometrist thought there was swelling on the brain and she was referred to the hospital.
"An MRI revealed a tumour that was seven by six by three centimetres in size."
During Emily's emergency brain surgery she went into cardiac arrest and suffered two strokes.
"She was asleep for six days. We considered turning off the life support, and that last day she woke up," Ms Green said.
The event has left Emily paralysed on her left side and has affected her speech. Emily underwent radiation treatment to try to remove the remaining ten per cent of the tumour.
"We spent 159 days in hospital. Christmas, Emily's birthday. Two school holidays," Ms Green said.
"Emily's goal now is independence. Getting back to doing what she used to do. She used to cook for us once a week, and helped out her little brother a lot."
Emily and her family want to raise awareness about the work of the Starlight Foundation at the children's hospital in the lead up to Starlight Day on May 3.
The charity has a room in the children's ward that gives patients and their siblings a space to play, do craft and make new friends.
Ms Green said the room's staff visited Emily when she couldn't get down herself.
"I think without the Starlight Room Emily's mental health would have gone down very fast," Ms Green said.
"Two months after the surgery her mental health began to decline. She couldn't communicate what she wanted to, she was lost in her head.
"Starlight kept coming around."
The foundation hosted a "unicorn" themed party for her birthday.
"When I told her we were coming back to the room today," Ms Green said, "Emily asked if we can we stay all day."
Emily's radiation therapy has been unsuccessful and the family are now looking for different treatments to eradicate the cancer.
For now, however, they are relieved to be at home and finding their "new normal". Emily has returned to school.
Starlight Day is on May 3. The charity is hoping to raise $1.3 million to fund the services it provides at every children's hospital in the country.
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