In an effort to keep raising money for much needed research into paediatric brain tumors I will be attempting to swim across the Bristol channel from Penarth to Clevedon this July.

To understand why this is such an important charity to our family our story is below.

The spring of 2020 whilst memorable for most as the start of Covid lockdowns in the UK is etched into our memory for a very different reason. Our 13 month old boy who was normally happy go lucky, cruising around the furniture and pottering about independently had not been himself. For the previous two weeks we had noticed he was losing his balance and no longer seemed able to support his body weight on his legs. We spoke to the GP who wasn’t too concerned. However, we were also talking to a private paediatrician who, after a few days of no improvement urged us to take him to hospital. After a couple of days in hospital it was decided to do a CT scan on Barney’s brain and that is when our whole world was turned upside down.

The scan revealed that a mass in Barney’s brain was causing a build up of cerebrospinal fluid. We were rushed to St George’s Hospital where Barney had urgent surgery to relieve pressure on his brain and an MRI scan. To our despair, the MRI scan revealed that our baby boy had a 9cm tumour in his brain. On April 8th and again on May 4th Barney had two major brain surgeries at St George’s to try to remove the tumour. Because the tumour was located in the 4th ventricle, entwined in important nerves and close to his brain stem, the surgeons were not able to achieve full resection which is a critical factor in the outcome. Barney was sent to have 9 weeks of chemotherapy with the hope it would help with a further attempt at successful complete resection. Watching our boy endure that was a truly harrowing, lonely and isolating experience.

Desperately searching for alternative options for his third surgery we discovered Conor Mallucci, a paediatric brain surgeon in Alder Hey who often gets cases where other surgeons have struggled. On August 20th Mr Malluci successfully removed the remaining tumour. He is a truly remarkable man who gave Barney a chance at life and his family hope and a future together. Following the surgery we travelled to Essen in Germany to receive 6 weeks of Proton Beam Therapy. This is a highly targeted form of radiation aimed at treating all of the tissue which the tumour had touched without causing lifelong damage. Whilst Barney’s treatment is over, he is still overcoming physical setbacks as a result of the cancer and harsh treatment and has regular check ups. Seeing the resilience of a little child is truly awe inspiring.

Today Barney is thriving. He is a larger than life character and has a wicked sense of humour. He is cheeky and quick to laugh. He loves reading, animals, school and his friends and never fails to put a smile on everyone's face. He recently completed a 1.3km school fun run. Something we could never have imagined two years ago.

Brain tumours kill more children and adults under the age of 40 than any other cancers. Statistics like this might lead you to believe that brain tumours receive a significant portion of the cancer research funding. Yet, despite this, brain tumours receive only 2% of the total cancer research spend and this does not sit right.

We have found our own way through this nightmare and continue to do so. We want to continue to do our own small part to contributing towards research and helping to improve the outcomes from a devastating paediatric brain tumour diagnosis. In order to raise funds, in 2022, we completed the Two Moors Way. This is a 117 mile trail across Devon that starts on the South Coast, crosses both Dartmoor and Exmoor before finishing on the North Coast. Tom took part in a non-stop ultra marathon completing it in 36 hours and Hannah completed it in a rather more leisurely 5 days.

If you would like to continue to support our chosen charity we would be so grateful.