THE mother of an "inspirational" teenage girl who died of a rare bone cancer believes her daughter may have survived if she had been allowed the latest drugs.
Chloë Drury, from Purley, whose memorial service takes place tomorrow (Saturday), was denied trial drugs because she was a few months short of her 18th birthday.
Chloë, who died on February 28, was diagnosed with Ewing's Sarcoma, a cancer which largely affects teenagers, three years ago.
"It's every parent's worst nightmare," her mother Debbie Binner told the Advertiser. "We had the perfect family and then suddenly a bomb went off. Chloë had pains in her leg and then out of the blue, she had cancer."
For the first eight months Chloë, who attended St Philomena's School in Carshalton, was in and out of hospital undergoing treatment her mother described as "horrific". On top of chemotherapy, which kept her bed-bound and forced her to be fed intravenously, Chloë was also given radiation treatment, surgery and stem cell transplants.
Chloë was only put on one drugs trial in her three-year illness, according to her mother, and that was only because she fought "tooth and nail for three years, kicking every door possible".
"There was a boy on the ward who took an Ewing's Sarcoma trial and he is still alive," she said. "He was worse than Chloë."
"Her doctor fought desperately for Chloë to be allowed another trial. The expert opinion is that there are no medical reasons for under 18s not being allowed on trials, it's purely bureaucratic."
Four months ago, Chloë was meant to receive new experimental treatment but was not allowed to because she was still 17, despite intervention from Teenage Cancer Trust's chief executive, Simon Davies, and Paul Burstow MP.
"Chloë only received the drug two weeks before she died," her mother explained. "But her cancer was already too far advanced to have any chance of responding. This was Chloë's only chance of possibly receiving something that could have worked."
Her mother described how after Chloës first round of treatment, her daughter convinced everyone apart from her family and five of her closest friends that she was well.
"She was amazing," said Mrs Binner. "She was very private so after she first got treatment and everyone knew, she told everyone she was better and they were never the wiser. Only five of her closest friends knew the whole time throughout.
"She carried on with going out and going to parties. She would go and have chemotherapy in the day and then get dressed up to go out at night.
"I think I knew she would not make it through but she would not say anything to anyone. She just wanted to live. She was afraid that people would treat her differently."
Her mother said Chloë had loved English and drama and had wanted to be an actor. Only two months before she died she had attended a Shakespeare course with the National Youth Theatre.
"We miss her terribly, we miss her voice," she said. "She was so funny and argumentative. She would say every day 'I love you' and 'you're my best friend'. There was no big goodbye at the end but she was able to die at home rather than in hospital."
Mrs Binner, of Peaks Hill, has decided to campaign "in Chloë's name" for restrictions to be lifted on under 18s being allowed on drugs trials.
"I want to use her determination and energy for something good. There are lots of promising drugs and we need to get access to those drugs more quickly. There is not enough interest; the cancer is very rare so the companies do not make enough money out of it.
"All this potential is wasted, right at the start of their lives.
"Nothing in Chloë's body changed between being four months before her 17th birthday and four months later when she was 18 – except the growing cancer."
Mrs Binner has also set up a blog at achildofmine.blogspot.co.uk to raise awareness about the disease and to give an honest account of the isolation and grief felt after losing a child.
A celebration of Chloë's life will take place at 3pm at St Mark's Church in Purley on Saturday.
