Ben’s epileptic seizures kept getting worse and worse. He was rushed to Bristol Children’s Hospital for an MRI scan, which revealed a benign brain tumour. His dad, Jon, told us about Ben’s journey and the operation which changed their lives.
“In the summer of 2019, we noticed Ben was having what we now know were absence seizures. These are seizures where a child completely loses awareness of their surroundings for a few seconds. He was six years old at the time. We had a meeting with his school’s Special Educational Needs and Disabilities Coordinator about these and had started considering that he may have epilepsy.
Then, in September, Ben’s behaviour became more erratic. We were referred for a CT scan, which showed an abnormality in his brain. We were rushed to Bristol Children’s Hospital for an MRI, which revealed that Ben’s epilepsy was being caused by a benign brain tumour.
It was difficult to process. The change in Ben’s condition came on quickly and this made it hard to cope with. There was a lot of information to take in over a short time. It’s not easy adjusting your expectations and hopes for the future.
Jon, Ben’s dadWe spent a while hoping and wishing for a cure. Then, the Covid pandemic hit, and we learnt that we had to help Ben with his changed personality and behaviour rather than trying to cure him.
Ben has been amazingly resilient and accepting as we have gone through this journey. He got to the stage where he didn’t want to go to hospital as he was always having tests, cannulas (which he found very painful as he has thin veins) and he had a traumatic experience going under general anaesthetic.
We found it useful talking to other people who had been through Bluebell Ward. Although it didn’t make Ben better, it helped us process what was going on.
Jon, Ben’s dadI want to tell other Bluebell Ward families to stick together and work together. You will need to lean on others and let others lean on you. Accept all the help you can get.
The level of professionalism and focus from the hospital staff was amazing. The Play Team helped Ben to cope with sustained periods of time in hospital and to deal with his anxiety about the tests and treatments.
Ben’s highlight would be the nurses making him banana milkshakes. Our highlight was the nurse who managed to record a seizure during the weeklong observation he had in one room. This allowed the medical staff to pinpoint the source of his seizures.
The staff at Bristol Children’s Hospital recognised that Ben had a rare form of epilepsy caused by a benign tumour in his brain. After several tests, they recommended that the tumour was removed as soon as possible.
The neurosurgery team performed a 10-hour operation on Ben to remove the tumour. We were told that the risks of the operation were considerable but worthwhile.
The day of the operation was horrible for all our family as we waited to hear the outcome. It was our daughter’s fifth birthday, which made it an even more emotional day.
With the added stress of Covid, there was only ever one adult allowed in the high dependency unit and wards, so it was very hard for myself and my wife. We rarely got time to see each other as we often tagged in and out.
Since his operation, Ben has been seizure free. He is now off medication and has managed to catch back up with his school life.
Jon, Ben’s dadHe’s living an active life again: swimming, running, kicking a ball around. We almost cried when his teachers told us he was ‘average’ in terms of his ability on some of his school reports.
The staff at Bristol Children’s Hospital were so helpful and supportive that I wanted to give something back to them and say thank you.
I personally found the experience of Ben getting ill stressful. I felt overwhelmed and out of control a lot of the time. Since Ben has been getting better, I wanted to be proactive and to take a positive step.
This year is my 50th birthday, so I thought I would run 50 miles to fundraise for Bristol Children’s Hospital’s Bluebell Ward, who specialise in children’s neurology and epilepsy. As I started training, it helped motivate me to know that I was supporting a great cause. Ben also did park runs with me. We enjoy running together.
In May, I ran 50 miles in the Pennines as part of an ultramarathon race. The race included 2,593 metres of climbing, taking on the Yorkshire Three Peaks Challenge of Whernside, Pen-y-ghent and Ingleborough. Even if it hurt while I was running, it was only for a day, whereas Ben had coped with discomfort for weeks and weeks.
Fundraising for the ultramarathon made it more meaningful to complete. Bluebell Ward have supported my son fantastically over the past few years in terms of diagnosis, care and treatment of his epilepsy, not to mention a life-altering operation. Throughout Ben’s time in Bristol Children’s Hospital, they were exceptional in the care and attention they gave him.
Support more children like Ben
Donate to Jon’s fundraiser for Bluebell Ward and help other patients with serious neurological conditions.