Sophie’s story

March is a time of hope.

Spring is on its way, the daffodils and primroses are out, and new growth is everywhere. But for me, it is a tricky month.

9 March is the anniversary of the death of my beautiful son Felix. On that day, in 2017, I discovered that he had died alone in his room at university. He was just 20. He died from SUDEP – sudden unexpected death in epilepsy – and, as you can imagine, our lives were ripped apart. Life has never been the same.

Later in March, after the anniversary of Felix’s death, comes Purple Day. People talk about epilepsy, raise awareness, celebrate positive attitudes towards the condition, and try and dispel the myths.  However, despite epilepsy being a common neurological condition, many people don’t know about SUDEP – and the extent to which it affects otherwise healthy young adults.

Around 500 people die from SUDEP in the UK every year, many of them young people like Felix. The deaths are often unwitnessed, with many occurring overnight.  The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.

The small charity SUDEP Action is doing excellent work supporting research, and also bereaved relatives.

The loss of young lives like Felix’s is absolutely heart breaking. As a mother I mourn not just the loss of my son, but of his future.  Here was a gentle, talented young man who had so much to give. He was embarking on his life, passionate about theatre and film, and acting in plays despite his epilepsy.  He was grabbing life with both hands, and then it was taken away.

This March I am starting my sixth year without Felix.

Purple Day is a brilliant opportunity to tell the world about epilepsy.

But it is also a chance to remember and celebrate the lives of those who have died as a result of the condition.

They will never be forgotten, and they will always be loved.