We’re excited to announce a new partnership with The William Low Trust, an incredible charity set up in memory of Wiilliam Low, who sadly died when he was just 17 years old following a brain tumour diagnosis.
As well as sharing the goal of accelerating kinder, better treatments for children diagnosed with a brain tumour, The Brain Tumour Charity and The William Low Trust also have another more unique connection. Our CEO, Dr Michele Afif, helped to provide treatment and care to William after he was first diagnosed with a brain tumour.
The Trust has pledged £10,000 to help fund Professor Marcel Kool’s COMMAND project that’s aiming to accelerate new treatments for medulloblastoma – the type of tumour William was diagnosed with.
William’s story
In 2005, when William was just five years old, he was diagnosed with a medulloblastoma. Following an operation to remove as much of the tumour as possible, he faced more than a year of gruelling radiotherapy and chemotherapy.
It was toward the end of that first year of treatment that our CEO first met William when she was working as a Consultant Paediatrician at North West London Hospitals NHS Trust (Northwick Park).
“Before I even met William, I remember discussing his case at our multi-disciplinary meetings and being struck by the positive impression he made on the whole team.
“When I met him, I immediately understood why. Despite going through gruelling treatment for a protracted period, William radiated a sweetness and kindness that was just lovely. It made him really special. I remember him as quite shy and thoughtful, but when he smiled his whole face lit up. Some patients leave their mark on you and William was definitely one of those for me.”
Despite the harsh treatments and against the odds, William initially made a complete recovery. He learned to walk again and was able to return to school. Although he still struggled with the impact of his treatments, he grew to be a bright lad, tall for his age and – like so many other young boys – he loved football. And was a true blue Chelsea fan.
Gradually, life went back to normal, although the family held their breath following each MRI scan and prayed for good news.
A crushing recurrence
When William was 13, the family received the crushing news that his cancer was back. After a lot of consideration, it was decided that the best path forward was a treatment plan that would give him the better chance of beating the cancer but would likely have a horrendous impact on William. This included further brain surgery, more chemotherapy and radiotherapy and a stem cell transplant.
It was heart-wrenching for William’s family to see him suffer so immensely again. But after months of relentlessly harsh treatments, the family received the news that he was tumour free again.
Recovery was even more challenging the second time around. William once again needed to learn to walk again but this time it was even more difficult as his balance was impaired and he felt constantly sick. He was no longer able to write or draw with any control over his right hand. Typically, William rose to the challenge and practiced every day so that he could use his left hand as dexterously as his right.
Gradually, Will got stronger and studied hard to catch up on the work he had missed, achieving really good grades in his GCSE’s – a remarkable achievement considering how much school time he had lost. He was particularly proud of his A* in Art – all done with his left hand.
Running out of ideas
In July 2016, a routine MRI scan showed that new tumours had appeared, this time in his spine.
This time, William’s medical team had run out of ideas. Any further treatment was likely to hurt him without much hope of stopping the cancer spreading. His family exhaustively investigated every possible clinical trial or experimental treatment, but nothing was suitable.
William was just 17, but he and his family were forced to come to terms with the impossible fact that there were no more treatments that could help him.
As his health slowly deteriorated, William fought bravely for more than a year, which his family made as enjoyable as they possibly could and made as many memories together as possible. No matter how bad he was feeling, he never complained and always had a smile for visitors (of which there were so many!).
William sadly died August 2017, surrounded by family and encompassed by love. He was only 17 years old.
The William Low Trust
The William Low Trust was officially founded on 14 February 2019, which was chosen because Valentine’s Day was one of William’s favourite days of the year.
The Trust aims to raise money for research into brain tumours and to support people with their grief. While doing this they hope to remember William in all that they do so that his short life has a positive impact on others and helps to give others the opportunity of life through research and improved treatments.
In August 2021, The Trust committed to helping fund research at the Brain Tumour Centre of Excellence at Queen Mary University of London. This research focuses on medulloblastoma, the most common high grade paediatric brain tumour and the type of tumour that William was diagnosed with. The project revolves around testing new treatment combinations to discover whether they show improved efficacy in preventing tumour growth, including new targeted therapies in combination with conventional chemotherapy agents at reduced doses to limit their detrimental side effects.
Supporting The Brain Tumour Charity
The Trust have supported The Brain Tumour Charity in a number of ways in recent years. In April 2023, we were honoured to be able to exhibit some of William’s art at our Time art exhibition at The Business Design Centre in London.
Last year, Richard Green – one of the Trustees of The William Low Trust – took part in the launch of our campaign for a National Brain Tumour Strategy.
Now, we’re excited to announce that The Trust will be supporting The Brain Tumour Charity by helping to fund Professor Kool’s COMMAND project.
Professor Kool and his team will use new, advanced cell culture techniques to build better models that help us understand how medulloblastomas – the type of tumour William was diagnosed with – are formed. These new models will also enable them to explore treatment options by performing drug screens.
“When William was alive, we found The Brain Tumour Charity incredibly helpful for information, research, and support. It was comforting to know that people genuinely care and that we were not alone. We’re delighted that Michele Afif is now the CEO, as we have fond memories of her when she was William’s oncologist.”
Helen Low, William’s mum and Trustee of The William Low Trust
“When I left Northwick Park, William’s cancer was in remission, and he was working hard to manage the side-effects of his treatment. He was often on my mind, and I know that my experiences looking after children like William led me to joining The Brain Tumour Charity.
“I vividly remember my first day in The Brain Tumour Charity and the moment, as I walked around our offices, I saw The William Low Trust sign on the wall. It was so unexpected it left me speechless. My heart plummeted, because I knew what that probably meant.
“It wasn’t long before I had the chance to catch up with Helen directly. That first contact after so many years was very emotional for us both, especially as we reminisced about William. But it was lovely to hear Helen talk about him – and of course The William Low Trust – with such pride.“
“Helen, Craig, Harriet and their loved ones have already achieved so much in William’s name. The drive to turn tragedy into something positive for other families affected by a brain tumour is truly humbling. I’m keenly aware of the toll this work can take on our Family-Led Charity partners, so I’m delighted that we’re going to be working more closely with The Trust and will be there to support them as they further William’s legacy and enormously grateful for their decision to support The Brain Tumour Charity by funding Professor Kool’s COMMAND project.”
Dr Michele Afif, CEO at The Brain Tumour Charity
“In the past we’ve been honoured to feature Will’s art at our Time Art Exhibition and have The Trust represented at the launch of our National Brain Tumour Strategy. We’re so grateful to The William Low Trust for their support and now choosing to partner with us to fund vital research to help children diagnosed with brain tumours.
“We’re excited to be able to play a part in Will’s legacy and make a difference to other families affected by a brain tumour diagnosis in his name.
“It’s a real privilege to work with families like Helen, Craig, Harriet and their loved ones and we’re committed to working with other organisations across the brain tumour community to move further, faster towards cures for all brain tumours.”
Phoebe Day, Gifts and Partnerships Manager at The Brain Tumour Charity
If you’re a charity that’s interested in partnering with us to help fund pioneering research, provide life-changing support services and change-making campaigns, please contact our Gifts and Partnership Manager – Phoebe Day. You can email Phoebe using phoebe.day@thebraintumourcharity.org or call her on 01252 749990.