The last 2 years have been a rollercoaster for us as a family after our 5-year-old son was diagnosed with epilepsy which resulted in several lengthy hospitalisations in Slough, Oxford and Bristol. We were lucky to get access to specialist care from Bristol’s Children Epilepsy Surgery Service resulting in hopeful prospects for our son's future.

We are immensely grateful to the team in Bristol and I am hoping to raise some money for the Wallace & Gromit's Grand Appeal which supports care for sick children in Bristol.

What Wallace & Gromit's Grand Appeal does:

From helping staff, patients or their families, The Grand Appeal puts Bristol Children's Hospital at the heart of everything they do.

They support the hospital through:

Family accommodation: they run three accommodation houses that provide a safe and supportive place for families to stay while their child is in hospital.

Medical research: they invest in medical research programmes to ensure the hospital remains a hub of innovation, where everyday experts pave the way for sick children through a network of projects with international impact.

Equipment: they fund state-of-the-art equipment to save lives.

Music, play and art therapy: their music, play and arts programme can be seen in every ward at Bristol Children's Hospital, helping young children to deal with the stresses and fears they may face during treatment.

Art enhancements: they work to make sure Bristol Children's Hospital provides a fun, stimulating and comforting space for the brave children it cares for.

Our Story

In February 2022 our, then 3-year old, son was diagnosed with epilepsy and since then, our lives have changed dramatically.

After an initial diagnosis of a benign childhood form of epilepsy, his condition deteriorated with frightening speed, as the medications were layered on the seizures and presentation of his condition became increasingly acute and it was clear this was something altogether more complex than initially thought.

By March he started to lose his speech. After more tests it was still unclear what was causing the epilepsy and as his condition worsened we were finally transferred to Oxford John Radcliffe hospital, under specialist neurological care, where Billy's situation worsened dramatically. Within 24h of admission our son was in Intensive Care.

It was clear that his condition was complex and the medical team’s lead theory was an undetected Cortical Dysplasia, thus after a week we were transferred to the Bristol Royal Children Hospital for assessment by the Childhood Epilepsy Surgery Service. Throughout this time our son remained very unstable and very unwell with lots of emergency medical intervention, as they battled to stabilise him and understand his condition.

In May our son underwent a 7-hour operation to conduct a Stereo EEG. 21 electrodes were drilled through his skull and inserted into his brain to measure brain activity. The team hoped to induce a seizure by applying a current through a wire, thus identifying the source of the seizures and highlighting a surgical target. Unfortunately, this didn’t happen. This was a huge setback for us. For the moment nothing more could be done and so we were transferred again to Oxford to prepare us to return home.

In November 2022 an effective balance of medications was landed upon and his seizures became controlled and he hasn’t had a seizure since. However, the amount of medication he was taking comes with significant side effects and the medical team did not anticipate he would remain stable. When seizures would return was a big question and daunting prospect hanging over us.

Even though we left Bristol without closure to our son's epilepsy the CESS team continued to evaluate scans and in February 2023 we received the amazing news that they had located the abnormality in his brain that caused his seizures. This opened up the opportunity for surgery to his brain. After a long wait our son underwent a second 7 hour surgery at the end of November 2023. He is recovering well from the surgery and now we have a long wait ahead of us to understand how successful the surgery has been in reducing or eradicating his seizures.

We are immensely grateful for the team in Bristol for their humanity, care and dedication to helping our son.

My ride from London to Amsterdam is a small challenge compared to what children in this hospital endure, and the care and dedication the hospital team bring day in and day out and it’s my way of saying thank you to all who helped us.