A MOTHER who felt she had nothing to live for after the death of her only son has vowed to raise awareness of the rare syndrome which claimed his life.

Shirley West, of Ross Close, Saffron Walden, has spoken of the night she returned home from a work Christmas party to find her 20-year-old son Jack face down in his bed.

He had suffered an epileptic seizure and was confirmed dead at the scene by paramedics.

It was ruled that the former County High School student had died of Sudden Unexpected Death in Epilepsy (SUEDP) – a syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed.

Although Jack was diagnosed with epilepsy at the age of 11, Mrs West said she had never heard of SUEDP until it was recorded as the cause of her son’s death.

“It is a mother’s worst nightmare to lose her only son so young,” Mrs West said. “I blamed myself for not being there to stop it from happening.

“I used to go in and make sure Jack was okay every morning before I went to work but I didn’t that day because I was getting a lift in and left earlier than usual.

“I didn’t get home until nine o’clock that night and that was when I found Jack face down with his head in his pillow,” she added. “I don’t know whether he died in the night or the next day but I felt guilty for not checking on him sooner.”

Despite the pain and heartache she has endured at the loss of her son, Mrs West said she would have been saved the guilt had she known about SUEDP sooner.

That is why she is embarking on an emotional fundraising effort in Jack’s memory.

She will be taking part in the Great North Run in a bid to make more people aware of what SUEDP is, while also raising money for the charities Epilepsy Research and Epilepsy Bereaved.

Paying tribute to Jack, Mrs West said: “He was a lovely boy – so gentle and kind. Jack was such a happy go lucky lad who never let his epilepsy get in the way of his life. He was 6’ 5” and always made an impression on you even if you only met him once.

“I think he would be proud of me for doing this, although he might be a little surprised to hear his mum was going out running.”

The 50-year-old will be joined on the run by her sister Sue, 57, of Linton Close, and nephew Marc, 36, from Wimbish.

Mrs West said it was her sister who has helped her through the traumatic ordeal.

“Without Sue I wouldn’t be here,” she said. “She made so many sacrifices for me and it will mean the world to have her crossing the finishing line alongside me.”

The trio will be taking part in the run on September 16 and are urging people to support their fundraising efforts. Visit mydonate.bt.com/fundraisers/runningforjack