PURLEY schoolgirl Chloë Drury died a year ago today after she was denied the treatment which may have saved her from a rare bone cancer.
Chloë died two months after her 18th birthday, following a three year battle against Ewing's Sarcoma.
During that time she had been denied access to a clinical trial because of an age restriction which meant she had to be 18 years old.
But by the time she reached her birthday on January 25, 2013, the cancer was too far gone.
Her mother Debbie Binner said it was "every parent's worst nightmare" at the time, watching her daughter go through out-dated and "horrific" treatment while being denied new drugs.
One year on, Debbie said it is the memory of that time that drives her to make changes to our health system.
"When the hospital said they could not do anything for Chloë, I could not believe it," she said.
"I couldn't believe they would not allow Chloë to take these drugs and I couldn't believe no one else had been driven mad by it. If I can change anything so that another child does not go through what Chloë did, or another family lose their teenage daughter or sister, then that helps."
Debbie has been campaigning solidly for the past year and is frequently invited to Parliament to help promote the Saatchi Bill.
Launched by Maurice Saatchi, who lost his wife to ovarian cancer, the bill hopes to improve access to clinical trials for rare diseases.
Chloë was put on a routine treatment of chemotherapy, radiation and stem cell transplants, which has not changed or improved for decades.
Although drugs for common cancers such as breast cancer and leukaemia now have high survival rates, innovation in rarer cancers and diseases has stalled.
At a meeting at the House of Lords on Monday, five of Chloë's friends accompanied Debbie to take part in a talk about the bill.
"One of Chloë's friends, Mike Thomas, did a speech at the beginning," Debbie said. "It was incredibly moving and amazing for a 19-year-old.
"He spoke about losing a really close friend at that age and how it had affected everyone, with something that dramatic happening in their lives at that time.
"It was such an awful experience, I just don't want it to happen to anyone else.
"This week feels very eerie, a year on since she died, it's been very difficult."
