During the coronavirus pandemic, Karen Kinsella would come home to find her teenage daughter asleep when she was supposed to be doing school work.
The mum-of-two from Hyde put it down to her being a teenager. But then Emily developed a headache, and a few days later, her mum noticed that her face had dropped on one side.
Not overly concerned, she contacted her GP who asked Karen to send a picture of Emily's face. Within minutes she'd received a reply telling her they needed to go to A&E urgently.
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Still unphased, Karen initially believed the response was dramatic, and actually felt a bit annoyed that she and Emily would have to spend the next several hours waiting to be seen.
So when the doctor returned with Emily's scan results, which confirmed she had a brain tumour, Karen recalls feeling totally "numb." The shock didn't leave her for several days.
Emily, who was 14 at the time, was immediately transferred to Manchester Children's Hospital and within days she underwent surgery to remove a section of the brain tumour in January 2021.
"Three days later they came and told us the tumour was very nasty," Karen recalls. "They said it was the worst case scenario and that they couldn't give a number on how long she was going to live."
The family were told Emily's tumour was "treatable" but not "curable" and she was referred to the Christie Hospital in south Manchester for six weeks of radiotherapy.
She was due to start a 12-month course of chemotherapy, but a bleed on her brain and contracting shingles delayed the life-saving treatment by a number of months.
"Emily was the only person in Manchester to finish the course of chemotherapy," Karen said. "Most children's bodies couldn't tolerate it for more than six months. She didn't moan once."
Karen said her daughter's diagnosis has brought her family closer together. She also has an 18-year-old son and her husband didn't miss one of Emily's appointments - even during covid.
After finishing her course of chemotherapy, the tumour was stabilised for a while and Emily was able to live a relatively normal life.
"She couldn't go back to school but her art teacher kept in touch and she went into school some lunch times to see her friends," Karen said.
"Emily was actually shortlisted as BBC young artist of the year before all of this. When she finally got the call to come into casting it broke my heart as the reality that her life had changed hit me."
Tragically, a few weeks before Christmas, Emily developed problems swallowing and was advised by doctors at Manchester Children's Hospital that she needed to have another scan.
After having to spend 18 hours in A&E waiting to be seen, the family were told it wasn't good news. The original tumour had returned and a secondary tumour had appeared at the brain stem - making it inoperable.
"The Christie did agree to do 10 sessions of radiotherapy at a lower dose, but then she ended up in intensive care because she couldn't breathe and was placed on oxygen," Karen said.
"She was there for six days and we were told to prepare for the worst twice. By this time she had pneumonia and her lung had collapsed. But she just didn't give up.
"They thought she wasn't going to make it. Her friends all came to say goodbye. We were all crying by her bedside. Then all of a sudden she began breathing on her own and they were able to reduce her oxygen. The doctors and nurses said it was a miracle."
Emily, who is now 16, has now finished her radiotherapy and was able to spend Christmas at home with her family. Karen says they are now turning their hopes to a trial drug - which is currently only available in America or France.
The drug would be free for them in the US, but due to Emily's condition, she is not able to fly there. Instead, the family are having to drive 12 hours to France every month to receive the drug - at a cost of £3,900 per month.
"The hope is that it will keep Emily alive until something comes along," says Karen. "It won't cure her but it could prolong her life and that's all we want for her.
"We'd like to get Emily on the drug for a few months and then we will turn our focus to start lobbying the UK government so that she can access it here.
"It's not just the money, it's the travel to France. It's the time off work and you just have to put your life on hold. We will find the money, even if we have to sell the house."
Emily, who lost one of her close friends, Liam Preece, to cancer earlier this year, is now hoping to use her experience to educate other teenagers about brain tumours, and the treatments available.
"She won't be able to go back to school so she just wants to be able to help others," Karen said. "The focus for us now is this drug.
"We just want to keep her alive long enough for a miracle. If we can keep her alive for a year or two, who knows what treatments can come through in that time."
You can find out more about Emily's journey, and how to help the Kinsella family here.
Read more of today's top stories here.
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