14-year-old Paul O’Gorman was diagnosed with leukaemia in November 1986. His 29-year-old sister, Jean, was diagnosed with breast cancer at the same time. Paul and Jean both sadly lost their lives to the disease and the O’Gorman family suffered a heart-breaking double tragedy. Just before Paul passed away, he asked his parents to help others like them. This was the start of an incredible legacy for children with cancer as the O’Gorman family began fundraising to help prevent other children’s lives being cut short.
In the early days, the aim was to raise £100,000 for research and support. But within four years, over £1 million had been raised, taking the O’Gorman family halfway towards their first major goal – a £2 million research centre at Great Ormond Street Hospital.
In November 1987, days after Jean’s death, Marion and Eddie met Diana, Princess of Wales. Deeply moved by the family’s double tragedy, she became personally involved in the charity, and inaugurated it on 12 January 1988 at Mill Hill Secondary School. It was thanks to Princess Diana that Children with Cancer UK (formerly Children with Leukaemia) came to be. The Princess continued to support us, keeping in touch and giving encouragement to our wonderful supporters until her untimely death in 1997. We were greatly enriched by the friendship of Diana, Princess of Wales and shall always remember her with fondness, pride and infinite gratitude.
By 1995, enough had been raised to open the first Paul O’Gorman Centre. Our funding meant that more clinical and lab-based research could take place, speeding up research into developing more effective treatments for children with leukaemia. The new facilities also helped more children to be diagnosed quicker – improving their chances and giving scientists and doctors more understanding of the disease.
In the early 2000s, we co-funded elements of a major, ground-breaking clinical trial that has greatly improved outcomes for children with leukaemia. The breakthrough itself was the development of an innovative new test called the Minimal Residual Disease (MRD) test, which measures how much leukaemia remains after treatment and how likely it is that a child will relapse. The MRD test is now used in the NHS as part of standard care for patients.
The first Paul O’Gorman patient hotel opened in 2004, for families to stay in to be close to their child during treatment. We also invested over £1 million to explore better treatments for infant leukaemia, and held our first international scientific conference.
Research published in 2006 showed that the number of children diagnosed with leukaemia increased by 50% in 30 years up to the 1990s. Ever more research into causes and possible treatments was needed and by the end of 2010 we had supported several major projects including a major UK-wide trial which changed how the NHS treated children with leukaemia.
We evolved from a small memorial charity to a major force in paediatric oncology, and became Children with Cancer UK. This was to reflect our evolution from focusing specifically on leukaemia to all childhood cancers. Along with our name change, we announced £1.5 million of funding for research into the causes of childhood cancer, and made a further £1 million available for essential research to develop improved treatments for a broad range of childhood cancers, including leukaemia, brain tumours, neuroblastoma and rhabdomyosarcoma.
By the end of 2017, we’d raised over £220 million and had helped fund two brand new family accommodation buildings to provide somewhere for children and families to stay during treatment.
We’d also funded 55 active research grants and projects, and awarded five Research Fellowships to talented young scientists representing a new generation of cancer research. Our expanded research focus now included a major brain tumour initiative to boost childhood brain tumour research.
Thanks to charities like Children with Cancer UK, childhood cancer survival rates have improved from 67.3% in 1990 to a predicted 85.5% in 2018. Today, children with cancer are ringing The End of Treatment Bell to mark this huge milestone in their lives – the end of their cancer treatment.
Watch our video to find out more about our work over the last 30 years.
Our vision is a world where every child survives their cancer diagnosis. To ensure we achieve this vision, our current research funding focuses on harder to treat cancers such as brain tumours and bone cancer. We continue to fund important support programmes for children with cancer and announced our three-year partnership with Beads of Courage UK in 2019. Our support means that children not only survive, but thrive.