My only brother Alan died of SUDEP in December 1990, aged just 27, having been diagnosed with epilepsy in May 1990. He had always led a very full and active life and so this diagnosis came as a huge shock to both him and us. He was however determined to continue to live the full and active life that he had been used to.

We grew up in Bristol and Alan attended QEH School, where he threw himself into the wider school life particularly excelling at rugby, representing Bristol and then the South of England Schools. Alan qualified as a barrister having studied law at Kings College London and then completing Bar School in London. Having gained a position in Pump Court Chambers, Alan moved to their Winchester Chambers in 1989. Alan had an accident in May 1990 and following this was diagnosed with epilepsy. He was given medication to control this but he was never told about the risks of SUDEP (Sudden Unexpected Death in Epilepsy). Alan had two further seizures and then suffered a fatal seizure in his sleep, on 4th December.

Following Alan’s death, Alan’s partner Jane Hanna decided to speak about Alan dying from epilepsy on the BBC programme Watchdog. Contact was made by four other families who had suffered a similar bereavement. The charity Epilepsy Bereaved was formed in 1995 and began as a campaign by five women (my mum Sheila and Jane being two of the founder members) who were all determined to understand why four young lives had been lost so suddenly and unexpectedly. At the time SUDEP was not known or recognised except by a handful of researchers around the world. The charity supported families bereaved through epilepsy related death and campaigned for a better understanding and prevention of SUDEP. The charity was called Epilepsy Bereaved as at that time very few people would accept that someone could die from Epilepsy.

The charity later changed its name to SUDEP Action recognising that the SUDEP landscape had changed, with the strap line ‘Making every Epilepsy death count’. The name also recognised that the charity had worked with researchers to come up with the definition of SUDEP and was a global leader on it. The logo changed to five people holding arms representing the five women who started the charity and all the people who support the charity. Alan’s partner Jane has continued to work tirelessly, she is CEO of the Charity and was awarded an OBE and international award for social impact for her work in this field in 2010.

The charity with a team of ten helped over 20,000 people last year and involved over 6,000 in cutting edge research into prevention of these sudden young deaths and understanding of the devastating impact of these deaths. As a result of the work of the charity it is now recognised that there are at least 21 deaths a week in the UK that are sudden and unexpected like my brothers and that at least half could be avoided. The charity works alongside clinical teams and public inquiry teams across the UK to help vital improvements to save lives.

May 8th 2023 would have been Alan’s 60th birthday. Having raised funds for the charity in the past, I would like to recognise the passing of what would have been Alan’s 60th birthday with even bigger and better fundraising than I have done before.

Over the weekend of 29th April, my husband Scott, sons Tom and Ben and I will be cycling between significant points in Alan’s life. We will set off from Kings College in London ending in Winchester on day 1 and then cycle from Winchester to Bristol on day 2. We will cover approximately 150 miles over the two days and are looking for sponsorship for this.

Then on Alan’s birthday Monday 8th May we will be hosting a Garden Party with Alan’s friends, family and friends of ours, many of whom never knew Alan but who have supported me over the past 32 years since Alan’s sudden death.

SUDEP Action

Although most people with epilepsy live long and healthy lives, epilepsy is one of the top-ten causes of early death. At SUDEP Action, we focus our efforts on providing tools to help keep people safe and on the priorities that bereaved families tell us are important: To prevent deaths; To be supported; To be involved.

We have won national and international honours for our achievements to date, but we recognise there is much more work to do, and this is why we need your donations. With your help we can strive to make a difference.