Thalia Fili Toseland was just like any other 10-year-old youngster – until concerns emerged about her health earlier this year, prompting her family to take her to the doctor.
Now dad Chris Toseland, aged 39, a senior lecturer in cancer biology at the University of Sheffield, has told of the ‘sledgehammer’ experience of finding their daughter had the illness, and backed charity Brain Tumour Research’s calls to increase Government funding to study the disease.
Thalia was diagnosed with an inoperable diffuse intrinsic pontine glioma (DIPG) in March 2023. The first indication something was wrong came in February this year when she was having difficulty controlling the movement in her left hand and left leg. She also had double vision.
Chris decided to share Thalia’s story as part of Diffuse intrinsic pontine glioma (DIPG) Awareness Day on May 17, after being told Thalia’s tumour could not be removed because of its sensitive location.
Chris, a senior lecturer in cancer biology at the University of Sheffield, said: “When we were told Thalia had a DIPG and it was inoperable, it was like a sledgehammer had come down on us. There’s no standard clinical approach to this type of disease and it’s hard to comprehend that nothing can be done. In the UK, there are very limited options. There are more options abroad but only at trial stage, so it is experimental.”
Thalia has just completed six weeks of radiotherapy at St James’s University Hospital in Leeds.
Chris said: “It has taken up so much of our time and is so tiring, but it has been worth it because it has had a positive impact. Some of her hand control has returned and she has more strength in her foot. The double vision she had has completely gone and she is now much more alert than she was. We will meet the cancer team in Sheffield next week to discuss the next options which include chemotherapy and the possibility of going abroad for a clinical trial.”
He is backing a call by Brain Tumour Research for the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
He wants the Government to recognise brain tumour research as a critical priority.
This increase in research investment would put it in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
Chris added: “I’ve signed the petition and encourage others to because money is so important; without it, there is no research. The Government needs to invest much more into studying DIPGs because so much is still unknown about them. Our whole life as we knew it changed in an instant. It’s devastating but my wife, Natali, and I haven’t had the time or brain space to contemplate it. We’re just riding a wave which we know will crash.”
Matt Price, community development manager at Brain Tumour Research, said: “For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent.”
“Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose,” he added.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/campaigning/brain-tumour-research-petition.