This fund has been set up for Benjamin Ciaran Pavitt who sadly passed away on 8 October 2021, following a relapse of his acute T-cell non-Hodgkin’s lymphoblastic lymphoma, aged 16.
His dad Mike shares his story…
Our beautiful boy Ben was diagnosed with non-Hodgkin’s T-cell acute lymphoblastic lymphoma on 1 July 2020. He’d been unwell for about two weeks, presenting with swollen neck glands, a cough and difficulty swallowing, and was initially thought to be suffering with a viral chest infection.
On admission to hospital on 30 June he underwent a chest x-ray, which identified a 13.5cm mass in his chest, and was referred to oncology. A biopsy was performed, bone marrow sample taken and CT scan carried out (which identified numerous lymphomas and fluid around the heart and lungs). Ben was transferred to paediatric ICU and put on non-invasive ventilation and intensive chemotherapy. A PICC line and chest drain were put in.
The initial treatment saved his life and established a good response. He was then in and out of hospital over the summer for further treatments, including to resolve adverse side effects of the treatments. Continued outpatient treatments throughout the autumn and winter established a good remission by February 2021 following delayed intensification treatments. He was moved to maintenance in March 2021 and coped well with both remote and regular schooling in line with his classmates, even completing his GCSEs with flying colours.
In June 2021, however, he suffered a relapse and returned to hospital for further intensive treatments. Unfortunately, Ben proved to be allergic to the pegaspargase and erwinase (members of the asaparaginase family) so alternative treatments had to be devised with a view to putting him into another good remission and offering him a stem cell transplant. Ultimately, though, his cancer did not respond adequately, and he wasn’t cleared fit for the transplant. He was approved for further chemotherapies developed for treatment of adults, but these were not generally available on the NHS and by the time they arrived Ben had already entered a terminal phase.
Throughout his treatment, he never complained once, nor did he give up hope of getting better. His mum Suzie and I want to counter the perception that cancer survival has a lot to do with how hard the patient fights, since Ben’s will to live was second to none. He has been and always will be our inspiration in the face of adversity. He always showed such courage, and even in the most difficult times, he would still be thinking of others, offering words of encouragement to friends and family.
Ben was an extraordinary young man. He loved cats, online gaming and Dungeons & Dragons, something which we introduced him and his sister Lauren to on a family holiday to Cornwall in 2019. His love for it was immediate, and the game really represented the complete Ben, as everything about him was adventurous and about loyalty, bravery and passion. He also played football, sang and acted, and was a first-rate student. Ben was a showman and an adventurer, but above all, someone who cared deeply for everyone. That is why he wanted us to raise money for childhood cancer research, so that other children and their families are given hope in the future.
It is something that has been – and is still – chronically underfunded, and we want to educate people as to the extent to which children’s cancer has been, and continues to be, the poor relation of cancer research. In turn, we want them to educate others, to raise awareness of the issue so that it can change.
Many children, like Ben, are heavily reliant on treatments that were developed decades ago, some as far back as the ‘60s. So, there is an evident and immediate need to develop new, less toxic treatments. In Ben’s case, we felt that more directed research could and should have equipped his medical team with alternative therapies which might have given him a better chance.
Childhood cancer should be our top research priority as a nation, not simply because no child deserves to be struck down as Ben was, but because we absolutely need the potential of our young people to be fulfilled. If we don’t do something about this now, we’re going to lose too many people like Ben, who, as someone who was always able to use his wit and intelligence in such a positive way, could have grown to provide immeasurable benefits to society.
It’s also vitally important to us that we raise awareness of the fact that childhood cancer is something which strikes without warning, and which respects neither former good health, fitness nor any other criterion or label which we all use to delude ourselves that we’re not ‘at risk’. Every member of our next and future generations is at risk and being told that there is an 80% chance of surviving for five years is cold comfort if you’re one of the many families afflicted in this way. We should never be complacent, but nor should we be willing to accept the inevitability of a single childhood cancer death.
We’ve already completed successful fundraising in the past for paediatric ICU at Southampton University Hospital and for the Piam Brown Children’s Cancer Ward, and have raised over £17, 500 for Teenage Cancer Trust. However, it was one of Ben’s dying wishes that we should take a funeral collection and then raise funds for CCLG as Piam Brown’s nominated research charity.
Ben’s auntie, Jacqui, has through her family business, Rumble Live Action Gaming, already raised more than £1,500 for the fund, and we have many more plans, including sponsored events based around aspects of Ben’s life, from his former school to his football team, to his love of food and quizzing, as well as music and theatre. We’ll be working with organisations including my legal firm, Paris Smith LLP, whose nominated charity throughout 2021 had been Ben’s oncology ward (Piam Brown), SOS Presents, with whom the whole family has performed many times, and other local businesses and clubs to develop awareness and fundraising through campaign events and the sale of badges and wristbands bearing Ben’s SNF branding. We’re also investigating the possibility of producing an album to generate funds.
The outpouring of grief we’ve seen from hundreds of people shows just how much Ben impacted and touched the lives of others. He gave so much love and received so much back in return. We can all learn from this and afford to live our lives a little more like Ben, showing the same compassion and care for others as he did.
This is Ben’s Legacy of Love.
Make a donation to Ben Pavitt's Legacy of Love Fund
Open an online fundraising page for Ben Pavitt's Legacy of Love Fund
Set up a regular Direct Debit donation to Ben Pavitt's Legacy of Love Fund
Benjamin Ciaran Pavitt
Born: 14 June 2005
Died: 8 October 2021
Taken before his time but never to be forgotten.
Ben's shop
Research projects funded
What are the effects of radiation and chemotherapy on children's developing brains?
Fundraising pages
Text CCLGBEN to 70450 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ben Pavitt's Legacy of Love Fund so that your donation is allocated to the correct fund.
Ben's social media