Epilepsy Bereaved holds a memorial service every three years for families and friends of those who have died from SUDEP or other epilepsy related deaths. The last service was held in May 2008 and below is an article describing the events of that day. The next one will be in Spring 2011. Look out for details on this website nearer the time.
UK and Australia remember together
“Say not in grief that they died but in thankfulness that they lived”
Epilepsy Bereaved is the first organisation to organise services in memory of all those who have died from SUDEP and other epilepsy deaths, but 2008 was the first year that we were able to share messages of support across the world. Messages were exchanged and read between EB and the Epilepsy Foundation of Victoria who held a service the same weekend.
In the UK around 250 people attended the Memorial Service at St James’s Church, Piccadilly, London on 17 May, many travelled quite a distance to come together in remembrance. Jennifer Preston, one of our trustees, read out the message to Epilepsy Bereaved from Australia:
“Today, we remember the many people throughout the world who have died as a result of their epilepsy. That there are too many deaths there can be no question. This situation is changing and it has been your leadership in the UK that is seeing a worldwide improvement in the attitudes of both medical and government authorities. On behalf of the Epilepsy Foundation of Victoria and our clients we thank you.
For all of you gathered here, today is much more personal because you grieve for those you have lost from your lives because of epilepsy. While it is a day of great grief, a day of sadness and tears, our hope is that we can all manage a smile as we remember the joy those we have lost brought to us and the memories they gave us. Here in Victoria we are grieving as well, we will hold a place for all of you in our hearts at our Memorial service.”
The varied range of music, prayer and readings were chosen from suggestions sent in by Epilepsy Bereaved members
Julia Reynolds once again delighted us by singing two solo’s during the service and Mark and Claire Phillips performed ‘The Swan’ on piano and flute. Readings by Margaret Birch; Andrew Fielding and Jane Hanna were very moving; thanks go to them all as this was no doubt a difficult task at such an emotional time. We would also like to give a special thank you to our youngest reader, Jack Megson, who delighted everyone with his confidence while reading the words of Gitanjali an Indian teenage poet.
As always hearing the names and ages of those who had died was difficult and once again raised the question ‘why’.
