“Say not in grief that they died but in thankfulness that they lived”
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 on May 14th 2011. Thank you to everyone who attended.
Vivek reading He Was The One Who...
Vivek-Anand Dattani spoke at the service and dedicated his reading of He Was The One Who to all who have lost a brother to epilepsy.
Vivek explains what happened at the memorial service and what it meant to the family to be there;
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Forget Me Not
‘Those we love are never truly gone.
They live in treasured memories in the hearts of those whose lives they’ve touched and shared along the way’.
On Saturday 14th May 2011, Dev, Rishi and myself attended St. James’ Church, Piccadilly, London for a memorial service of those who have sadly passed away to SUDEP and other epilepsy related deaths.
Epilepsy Bereaved hold the service every 3 years for families and friends who have lost their loved ones to an epilepsy related death. The families and friends come together on this day to remember those and share their memories.
Reverend Lucy Winkett introduced the ceremony followed by Professor Stephen Brown who welcomed all the families and friends on behalf of Epilepsy Bereaved.
Jane Hanna OBE read “Do not stand at my grave and weep” by Mary Elizabeth Frye. Young children from the Holy Cross RC School Choir, Fulham sang two choral performances which were simply amazing. In between the two performances I read out my poem “He was the one who…”
We then listened to “Don’t look back in anger” by Oasis followed with a hymn and the Reverend read a passage from the bible.
The Reverend then read out the names of those who have passed away. This was very saddening, as Ravin’s name was read out along with a list of people whose age ranged from just 15 months to 58 years old.
Mark and Claire Phillips performed “Pavane” by Faure on the flute and the piano. It was such a beautiful performance.
The service proceeded as we listened to “High” by the Lighthouse Family, followed by Roger Scrivens reading out “Masques” by Karen Nelson. This poem had an immense impact on the families as it was a poem we could relate to.
An international message from SUDEP Aware in Canada and Epilepsy Foundation in Australia was read by Jennifer Preston. It is very heart-warming to know that the awareness of SUDEP is being raised all over the world and as Jane Hanna stated on the day, we have to carry on the global conversation about SUDEP.
The ceremony ended on a hymn and the Reverend said a few final words.
Meeting all the other families and friends at the service was such a surreal feeling. This really made us feel as though we were not the only family who have suffered a loss to SUDEP. Everyone was so welcoming and lovely. We shared our stories and spoke about our different experiences. The people we met were compassionate, some had lost their loved ones over 40 years ago, yet their emotion and love for when they were telling their story, made it feel as though they suffered their loss just yesterday.
The Dattani Family would like to thank Epilepsy Bereaved for holding such a beautiful memorial service.
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Below is an account of our 2008 service;
UK and Australia remember together
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.
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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’.
