Her story captured the hearts of hundreds of thousands of people around the world who followed her courageous three-year battle against a rare brain tumour via her Claudia’s Cause Facebook page.
And today, on what would have been her 10th birthday, researchers at The University of Nottingham have given their thanks to Claudia Burkill’s fundraising which has raised a staggering £250,000 to fund research into the disease that claimed her life.
Professor David Walker, Co-Director of the University’s Children's Brain Tumour Research Centre (CBTRC), said: “What Claudia, her family and friends have achieved is nothing short of remarkable. They have all had an enormous impact and we are immensely grateful for their unending commitment to our work.”
Against the odds
Claudia was just five years old when she was diagnosed with the incredibly rare and extremely aggressive Metastatic PineoBlastoma tumour in June 2011. Doctors gave her just six weeks to live.
Despite the poor prognosis, Claudia fought bravely against her illness, defying the odds at every step. She underwent two extremely high doses of chemotherapy (along with numerous other courses of standard chemotherapy) and 44 sessions of twice-daily maximum dose radiotherapy and in April 2012, following an experimental treatment called the Milan Protocol, Claudia was believed to be one of the first in the world to beat this devastating disease.
Sadly, at her first follow up MRI in July 2012, two new brain tumours were discovered in Claudia’s cerebellum along with a large tumour in her spine. Despite this, Claudia continued with ground breaking treatment, instigated and delivered by the CBTRC and incredibly was given the ‘all clear’ in June 2014. Claudia passed away in October 2014 due to complications from her treatment.
During her illness and since her death, Claudia’s family have used their Claudia’s Cause Facebook page to raise awareness of brain tumours, as well as raising funds for a number of charities including a quarter of a million pounds for CBTRC which treated Claudia during her illness.
Lack of funding
The money raised by Claudia and her family will have a huge impact into research into the diagnosis and treatment of brain tumours in children.
Claudia’s mum Andrea Burkill, said: “Since learning of Claudia’s illness, we have been driven, as a family to raise awareness and equally to raise funding into the research of children’s brain tumours. There is an enormous lack of funding and understanding into how cancer research funding is distributed that once we learnt about the massive shortfall, we knew we had to do something.”
CBTRC studies the biology of brain tumours (how they grow, and how they progress), how we can improve the way drugs are used in treatment, and campaigning to improve the awareness and diagnosis of brain tumours and the damage they cause. Claudia’s Cause has helped to buy new equipment for experiments, providing vital technology needed to advance our medical knowledge.
Claudia’s Cause has supported Headsmart: Be Brain Aware Campaign, which CBTRC runs in partnership with Royal College of Paediatrics and Child Health, and The Brain Tumour Charity. Claudia’s fundraising has contributed towards national awareness raising and research by CBTRC into what the campaign has achieved, and crucially, what needs to happen next. Thanks to such funds, we know now that by 2015, the average diagnosis time in the UK has halved. This means the UK is now one of the best at diagnosing children’s brain tumours. CBTRC is now in the process of revising the guidelines to encourage health professionals to recommend a brain scan at an earlier stage, and will be relaunching this in 2016/17.
The centre has made a commitment to “halve the harm” that brain tumours cause to children who get them. It is working with others to shape the way children whose vision is threatened are selected for sight-saving therapy to reliably test new drugs launched for this purpose. It is also identifying children who are at the greatest risk of suffering a complication of surgery where they lose the power of speech and only partially recover subsequently.
In 2016, Claudia’s Cause will also help improve rehabilitation. The centre will be studying the long-term language impairments, and psychological impacts of brain tumours on children. Understanding more about the impacts of these conditions on children’s mental health will allow healthcare specialists all over the world to provide the best emotional support to patients and their families.
— Ends —
Our academics can now be interviewed for broadcast via our Media Hub, which offers a Globelynx fixed camera and ISDN line facilities at University Park campus. For further information please contact a member of the Communications team on +44 (0)115 951 5798, email firstname.lastname@example.org or see the Globelynx website for how to register for this service.
For up to the minute media alerts, follow us on Twitter
Notes to editors: The University of Nottingham has 43,000 students and is ‘the nearest Britain has to a truly global university, with a “distinct” approach to internationalisation, which rests on those full-scale campuses in China and Malaysia, as well as a large presence in its home city.’ (Times Good University Guide 2016). It is also one of the most popular universities in the UK among graduate employers and the winner of ‘Outstanding Support for Early Career Researchers’ at the Times Higher Education Awards 2015. It is ranked in the world’s top 75 by the QS World University Rankings 2015/16, and 8th in the UK by research power according to the Research Excellence Framework 2014. It has been voted the world’s greenest campus for three years running, according to Greenmetrics Ranking of World Universities.
Impact: The Nottingham Campaign, its biggest-ever fundraising campaign, is delivering the University’s vision to change lives, tackle global issues and shape the future. More news…