Full of energy and life, Lee died from a condition he didn’t know could kill

Lee Johnson, 24, had just been selected to coach football in the US when he died due to the epilepsy he had suffered since childhood.

Deaths from epilepsy are on the rise, and one Yorkshire family’s tragic experience has led them to do all they can to help find out why.

SUDEP, Sudden Unexpected Death from Epilepsy, claimed Lee’s life in 2010.

On December 11 2010, Lee was feeling great. He had wanted to change direction after working for three years in sports marketing at a company based in Manchester. He’d just that day been told informally that he had been selected as a coach for a soccer camp in the US, and had plans to train as a PE teacher after that. He’d told the selectors that he suffered from epilepsy, took daily medication to control the condition, and had been free of day-time seizures for eight years. He’d studied Sports Management at NorthumbriaUniversity, and played regular football and cricket. He was in rude good health, loved communicating his passion for sport to others, and was a natural for the job. Many people who met Lee said they’d never known a more enthusiastic and smiley person.

He shared a house with three friends, but that Saturday evening went out for a drink with another mate.

Always extremely conscious of health and fitness, and the need to steer away from excessive alcohol in case it triggered a seizure, Lee drank infrequently, and was always careful to stop after a pint or two of beer or shandy. Such was the feeling of social stigma associated with epilepsy, he simply wanted to get on with life and had told barely anyone outside the family about his condition, diagnosed when he was nine years old.

The morning after Lee and his friend had been out, his housemates were up and about, clattering around the house and popping down the road for the newspapers. As lunchtime approached, one of them knocked on Lee’s door and when there was no reply went in to find, to his utter shock and horror, that Lee was dead in the bed.

Lee’s mother, Vicky, was busy sorting out the Christmas tree when the police car drew up outside the family home in Collingham, near Wetherby, and somehow knew before she was told that something awful had happened to her son. While the devastating news was still sinking in, she and husband Simon had to drive up to Newcastle and tell Becky, who was at university, that her beloved brother was gone.

“Epilepsy had been part of our lives for 16 years,” says Simon, a sales director for a sports company. “We genuinely did not know that you can die from epilepsy.” Vicky adds: “We just thought if he continued to take his medication he would be fine, as he had been for so long. Having found out what we know now, we owe it to Lee to work to try and remove the taboo around epilepsy, raise awareness that epilepsy can kill and raise money for research into understanding why these deaths happen. We were never told death was a risk.”

Simon, Vicky and Becky have thrown heart and soul into raising awareness, and have gained support from their MP Alec Shelbrooke.

Fundraising in Lee’s memory to assist research into epilepsy has surpassed everyone’s wildest dreams, and at the Smile with the Stars Ball held at Elland Road in Feb 2012, the Lee’s Smile Charity was launched. Over £150,000 has been raised in the 3 years since Lee died – an amazing tribute and fantastic legacy for a life cut so tragically short.

The Yorkshire Brain Research Centre team is looking forward to working with the Johnson familyto continue to raise funds and awareness for epilepsy research.