Ben lives with his brother Sam, and parents Kirsty and Robert. In 2024, at 8-years-old, Ben was rushed from their local hospital, where he was being treated for septic shock, to Leeds General Infirmary after a serious cardiac arrest.
What no one expected, was a week later for the results to come back stating that Ben had Burkitt lymphoma. Ben’s Mum, Kirsty, shares their story…
“Ben spent 7 weeks in the Paediatric Intensive Care Unit (PICU) and 10 months total in hospital, including 3 months on ward 31. We stayed in the Candlelighters cottage for the majority of Ben’s incredibly long hospital stay and it was an absolute lifeline, with him staying in hospital for so long it meant that we could have a break from the hospital knowing that Ben wasn’t far away.”
“Ben’s mobility was severely impacted due to his long PICU stay causing his muscles to become weak, as well as sepsis damaging his right leg affecting his muscles and nerves. He had to learn how to physically do everything again. At this point when he arrived on ward 31, he had already learnt how to sit up again and support himself, but he was unable to stand or walk.”
While in hospital, the Family Support Team helped encourage light movement to build Ben’s confidence and mobility through fun activities.
“Candlelighters went out of their way to not only support Ben but to adapt as much as they possibly could due to his limited mobility at the time. They also considered his interests and personality and made the effort to do activities that they knew would entice him out of bed. Ben’s favourite movement-based activity was pirate-themed and included collecting ‘treasure’ from the pavilion 1-2 times per day which he was able to exchange for a prize at the end of the week, he also took part in a carnival which included several activities such as a pinata, throwing a beanbag to knock down skittles and using a water gun to try and shoot some targets. There was also the Olympics and he especially enjoyed the wheelchair race and watching the Candlelighters team, nurses and even Dr Bob get involved!”
“He found a lot of solace on his iPad as a means of escape but at times, it did mean missing positive things that were going on around him. Movement-based activities were especially effective at encouraging time away from his iPad. As a family, it meant everything to see him simply be a child again and seeing him smile, as well as seeing his physical activity increase.
One of the hardest things about him getting so unwell was missing how physical and active he used to be before everything. Seeing old flashes of Ben wanting to be more active and taking part in movement activities gave us a lot of hope that with time and physio, his mobility would improve.
Cancer can take away so much from children and Ben says that losing his mobility was one of the hardest things about everything he had to go through.”
At Candlelighters, we’re there to support the whole family from the moment of diagnosis, for as long as families need us. Whether that’s having a brew and offering a listening ear, being able to provide accommodation at The Cottage, or inviting families to come along and have fun at one of our infamous parties!
“Ben has an older brother who also really benefited from Candlelighters support. My favourite thing about Candlelighters is that it isn’t just about the child who has cancer or their parents, it is about supporting the whole family including Grandparents and siblings. Sam was able to go to sibling groups, guitar lessons and even a residential. He was so inspired by the guitar lessons, he now has his own guitar, is in a band at school and is also now learning piano. It all started with Candlelighters.”
“Even now that Ben, now 10, is in remission and at home the support hasn’t ended, and I believe that is truly important, as remission can at times be as scary and difficult as treatment. People expect you to go back to normal but that isn’t the case with Candlelighters. Ben was thrilled to go to the Halloween and Christmas parties, not just because he wasn’t well enough the previous year but because he wanted to catch up with Candlelighters as they have become such an important part of his life.”
Sign up now to Move Every Day in May to support children and families affected by cancer.
By taking part in challenges like Move Every Day in May you can help to provide vital services that make a difference to families like Ben’s. The challenge is simple – complete any movement every day throughout the month of May – it’s your challenge, your way!
So, grab your trainers, your swimming costume or dust off your yoga mat, however you want to move, just keep moving to show your support for children and families facing cancer!
