A mother of a man who died unexpectedly is offering support to parents whose children die suddenly.
Lesley Pope from Burgess Hill has teamed up with Cardiac Risk in the Young (CRY), the charity which helped her recover from the tragedy, to write a book to help mothers deal with bereavement.
Lesley’s son Gary, 30, died in his sleep while he was on holiday in Portugal.
CRY’s specialist centre at St George’s Hospital, London, concluded it is likely Gary died from genetic heart condition Brugada syndrome, which causes abnormally rapid heart rhythm.
Lesley said: “The feeling of loneliness was at times overwhelming that first year.
“Strangely I often preferred to be on my own, craving peace and quiet. Sometimes I felt I wanted to run and keep running but I understand now it was the reality of all that had happened I was trying to escape from.”
Lesley has contributed to the book, Young Sudden Cardiac Death: A Mother’s Grief, for mothers whose child has died from a sudden cardiac death aged younger then 35.
The book was released on Saturday, March 14.
Lesley described the moment she heard news of Gary’s death: “I recall standing in the middle of my bedroom, hearing this quiet voice speaking to me and the indescribable physical sensation which shook my whole body, asking: What do you mean Gary’s dead? How can he be? He is on holiday. He only recently texted me.
“The mix of anger, pressure that I had to sort out the mistake, knowing I had to pull myself together. My husband Roger standing in the middle of the room staring at me, barely speaking; my son Robert, in the doorway with an unforgettable look of terror on his face slowly backing away as I walked towards him, delaying telling my daughter Louise, wanting to protect her for as long as possible.”
CRY helped her family test to see if they were carriers of the gene which caused Gary’s death.
“I know a part of me died with him. We were in dreadful shock that morning and felt the world was collapsing around us. I knew then that our lives would never be the same again. Our old life ended that day and we started a completely different one, without Gary.”
But with support, Lesley has been able to remember Gary’s life with joy.
“As I reflect on our time with Gary I can recall every one of his 30 years and feel privileged to have been his mum,” she said.
I know a part of me died with him. We were in dreadful shock that morning and felt the world was collapsing around us. I knew then that our lives would never be the same again
“He had a happy fulfilled life and achieved and experienced so much.
“I no longer feel the loneliness I once did although I often still feel lost without him.
“I miss and think of him every day and occasionally feel him near. I feel sure he would want us to build it back together somehow, and we are on that journey now. I know Gary will be with us every step of the way.”
Friends and family of Gary have raised £30,000 for CRY since he died.
The book has been compiled by CRY’s chief executive, founder and former bereavement counsellor, Alison Cox MBE. It features 10 chapters from women, including Lesley, who recount and talk through their personal experiences.
“To have been able to have read other mums’ stories, I feel would have been of invaluable support to me. So it’s for all the other mums now and sadly, those in the future, that I share my story,” Lesley added.
Alison Cox said: “The impact on a mother of her child’s death is well documented but it is now properly recognised that they cannot be replaced by a mother having another baby, time does not heal, nor will the mother one day move on.”
The charity has also published booklets on dads, siblings and partners.
“Family members all grieve differently but in a battle to help her partner, her other children or her own parents, a mum can become totally swamped by the shared mourning of their intolerable loss. Yet, craving to hear or say her dead child’s name to keep their memory alive can result in her subconsciously excluding the needs of other family members.
“The grief, the numbness, the barren despair of a mother dealing with the inexplicable sudden death of an apparently fit and healthy child, with no time to say goodbye establishes young sudden cardiac death at the cutting edge of grief.”
Every week in the UK, 12 people aged 35 and under die suddenly from an undiagnosed heart condition – 80 per cent of with no signs or symptoms. The only way to detect cardiac abnormality is by having a CRY screening test. On April 18 CRY is holding a Bereavement Support Day, exclusively for mums.