Many of our supporters feel inspired to sponsor a day or more of research as a meaningful way of honouring a loved one affected by or lost to a brain tumour and we’re grateful to everyone who supports us in this way.
Here we’d like to celebrate one of our Member Charities who has just completed sponsoring a researcher through the four years of their PhD, which meant raising an incredible £143,657.
To achieve that substantial sum, The William Low Trust has held three fabulous balls, organised a 10-mile London walk taking in 12 bridges over the River Thames, as well as smaller walks, quiz nights, wine-tasting evenings and a safari supper night, not forgetting kick-boxing, mindfulness and Pilates fundraisers.
Helen Forbes-Low set up The William Low Trust with husband Craig, daughter Harriet and their committee in memory of son William, lost aged 17 to a medulloblastoma. She said: “Sponsoring a PhD researcher at Queen Mary University of London gave us purpose and, even more importantly, it has given us hope, knowing that the focus is on finding more effective and kinder treatments for medulloblastoma.
“We met the researcher we have been sponsoring, Thomas Willott, when he was first recruited nearly four years ago and have loved meeting up with him each year to get an update on his progress towards his PhD. We met him again last month at Queen Mary as he prepared to write up his dissertation. It’s been both lovely and emotional to see him maturing through the process.
“It’s meant so much to us that we’re helping to make a difference and keeping Will’s memory alive.”
Speaking about the importance of The William Low Trust’s sponsorship, Thomas (pictured above) told us: "This funding has been crucial for my research, initially allowing me to join Prof Silvia Marino’s team at the Queen Mary Centre of Excellence and undertake an exciting and novel project which has further attracted collaborators in both clinical and pre-clinical brain tumour research.
"Not only has this greatly advanced my personal development and expertise, this research funded by The William Low Trust also has the potential to greatly impact the field of medulloblastoma research and ultimately improve our knowledge and how we treat this disease."
Thomas added: “The model we have developed and our findings have already gained significant interest from other researchers in the field, with the work soon to be published, and I have also been selected to present at the 2025 Society for Neuro-Oncology’s Paediatric Neuro-Oncology Conference in San Diego which will bring together international leaders in the field of brain tumour research.
Tom Willott explaining his research to Helen, Craig and others from The William Low Trust
"I have really enjoyed my time here at Queen Mary and am immensely grateful for the support I have received from Silvia, The William Low Trust and Brain Tumour Research. I am hoping to take the skills and expertise I've developed to continue my research career in the field of Neuro-Oncology."
It’s clear that sponsoring vital research into medulloblastoma to find kinder and more effective treatments is hugely important for The William Low Trust and especially for William’s family.
There’s another aspect that makes the fit very poignant for the Lows. William was very interested in science – he did well in his science GCSEs and was studying for an A’ level in Chemistry. And likewise, Harriet, the big sister who Will adored, is also very interested in science, doing her degree in Biomedicine and then going on to do a Master’s in Health and Humanities which included the social implications of health on people. Harriet now works in a special school with pupils with complex needs and because of her experience with Will when he was very poorly and in and out of hospital, she isn’t fazed by children with a whole range of health issues.
William was diagnosed with a medulloblastoma, aged five, after his parents Helen and Craig had repeatedly taken him to A&E with head, neck and leg aches that made him sick and tired. He underwent surgery and treatment, but it was extremely gruelling with radiotherapy every day for six weeks and chemotherapy for 57 weeks. Over a long year, Will suffered endless infections, each one potentially life-threatening. Blood tests, assessments, surgery, being wired up to machines, physiotherapy and occupational therapy became part of daily life.
Eventually Will’s life went back to normal, although the family would hold their breath every time he had an MRI scan.
Aged 13, however, Will and his family learnt that the cancer was back. This time Helen explained that “the tumours were scattered like icing sugar all over his cerebellum”. A tough treatment plan was put together after much consultation and advice sought from experts around the world, which included brain surgery, more chemo and radiotherapy and a stem cell transplant.
Will had to learn to walk again, made even more difficult because his balance had been impaired. And he felt constantly sick.
The stem cell transplant had really harsh consequences, and the chemo burnt his skin inside and out and stopped Will eating for many weeks because the chemo had damaged the skin in his mouth and gut. But eventually, Will was free again of cancer.
Will (pictured below) worked hard to catch up with schoolwork and achieved good grades in his GCSEs. However, in the summer holidays that followed, a routine MRI scan showed new tumours in Will’s spine. Despite exhaustive investigation of every possible clinical trial, nothing was appropriate.
The Lows had to face that fact that there was nothing more that could be done for Will.
Will’s family was determined to make his last few months as enjoyable as possible. A friend converted their garage into a downstairs bathroom so that Will could come home from hospital. He was gifted with some lovely experiences by a number of charities and spent an evening with Simon Cowell at Britain’s Got Talent, had footballer Frank Lampard over for afternoon tea and enjoyed some special trips out with the family, or spent time with friends and family, watching movies and having his dog Basil up on the bed for cuddles.
Helen added: “William never complained and always had a smile for visitors – no matter how bad he was feeling.”
William died on 11th August 2017, “surrounded and encompassed by love”. His last word was “Harriet.”
On the second anniversary of losing Will, his family (see image below) launched The Wiliam Low Trust to help bring an end to the devastating impact of brain tumours, especially medulloblastoma, on patients and their families.
Related reading
- William’s story
- What is a medulloblastoma?
- Our Centre of Excellence at Queen Mary University of London