The parents of a teenage girl who has died from a rare liver cancer hope their daughter’s illness will lead to increased awareness of the disease.
Amy Louise Beckingham died of fibrolamellar on October 6, aged 19. Only around 200 cases of the disease are diagnosed every year in the world.
Amy’s mother, Sarah Danbury, and step-father, Adrian, of Colne Court, Grantham, hope to raise awareness of the disease in a bid to increase the research into it and find a cure.
Amy was diagnosed with the disease and underwent surgery last year to take away part of her liver, but the cancer had spread and she was given a year to live. She survived another 13 months before she passed away in City Hospital, Nottingham.
A few months ago Sarah and Adrian got married and Amy was a bridesmaid at the wedding at St John’s church in Grantham.
Sarah said: “She had a heart of gold. Everybody loved her. She really touched their hearts. She never complained about anything when she was ill. She was always worried about everybody else. She would tell us to stop crying. She was very, very brave.”
Unlike many other cancers, fibrolamellar does not present itself until the later stages. Amy’s cancer was only discovered after she suffered a swelling in her leg due to a blood clot. She was taken to A&E and only later was a tumour discovered on her liver.
Adrian said: “We are looking for people with similar experiences to come together because more voices are better than one. There is no information out there. It’s a shame really. We had never heard of it and even the nurses at Queen’s Medical Centre had not heard of it. If the medical staff can get more help from Government with financial backing then that’s something.
“Our mission through Amy is to get some form of backing to see whether we can set up something where information is more readily available in the UK, because there are limited resources from our experience.”
Fibrolamellar (full name fibrolamellar hepatocellular carcinoma) usually attacks young people between the ages of 15 and 30, although much younger and older people are known to have been victims of the disease. It usually only presents itself at stage 4, the last stage of cancer, when it has spread to other parts of the body, so even with surgery there is little chance of survival.
Amy was given drugs to slow down the progression of the cancer and later on underwent a drugs trial at the Royal Free Hospital in London.
Adrian and Sarah say they are only aware of two other cases in the country. One of those was a 19-year-old girl who died a few years ago and was featured in the Daily Mail. Adrian said: “There needs to be more research into it. In the US they have a massive Rockefeller research facility, but in the UK there is very little.”
Adrian and Sarah have worn green ribbons as part of their bid to get more awareness of fibrolamellar. Adrian said: “Amy was a very kind, sweet girl. She was selfless throughout the whole experience. She never let her illness get her down. She never complained once about her condition. When I first met her she was a shy and a very caring girl. She became more outgoing later on.”
Amy attended St Hugh’s School and Grantham College and enjoyed music.
Before she died she met the cast of TV soap Hollyoaks thanks to the Make a Wish Foundation.