A West Lothian mum says she is terrified her daughter will die from the same rare cancer that killed her auntie at the age of 19
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"We didn't think she would make 17. When she was first diagnosed at 12-years-old we were told she wouldn't make it to her 13th birthday, but she is a fighter and she just keeps carrying on. "It took almost eight months to get a diagnosis but after months of testing and different biopsies, she was finally found to have both metastatic pineoblastoma and leptomeningeal disease.
"How harsh it is on adults and knowing how much worse it is on kids. She had three tumours, and they were able to remove just one but with other treatment, the doctors got the disease under control." Ellie has been on palliative chemotherapy since with mum Elaine trying to make as many special memories while they still can.
"It's genetic so I have the gene and passed it onto her. I'm afraid the same will happen to Ellie. Every day is so precious. I just hope this chemo - the temozolomide will slow the tumours down and I dread the thought of it not working.
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