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

LEE is everywhere in the house. Playing football, lined up with his friends on the cricket team, in several playful portraits with his younger sister Becky, on holiday with the family in Florida. Looking at the most recent photos, it’s difficult to believe he was approaching his 25th birthday, a day which, sadly, he would not live to celebrate.

In among the loving pictures of Lee, from which a vibrant energy and carefree optimism seem to emanate, his parents Vicky and Simon have kept a box of more than 300 sympathy cards and letters. Vicky has only very recently been able to bring herself to read the heartfelt words from the many who loved their son. There’s comfort to be had from so much support, but they know they will never get over their loss, and, four months on, everything is still very close to the surface.

On December 11 last year, Lee was feeling great. He had wanted to change direction after working for three years in the marketing department of an online sportswear 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 seizures for eight years. He’d studied Sports Management at Northumbria University, 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 and smiley person.

He shared a house with three male friends and had a girlfriend, 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.

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 Simon had to drive up to Newcastle and tell Becky, who was at university, that her beloved brother was gone. An inquest was opened and adjourned, with the full hearing due to take place on June 8, and an interim death certificate was issued so that Lee’s funeral could take place. Lee’s death is, according to the post mortem results, thought to have been “from natural causes due to epilepsy”.

“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.”

After the first couple of seizures Lee suffered – frightening early- morning episodes when he went floppy, shook and made gurgling noises – a diagnosis of idiopathic epilepsy (epilepsy of unknown cause) was made. The right level of anti-seizure medication was found, and life pretty much went back to normal, say Simon and Vicky, who nonetheless paid great attention to avoiding known risk factors such as stress and lack of sleep.

In his early teens Lee went five years without an episode, and his consultant suggested weaning him off his medication, to see if he had “grown out of” the condition as some young people do. Unfortunately, after coming off the tablets, he had another seizure on his first day in sixth form. He went back on the medication, and in his last visit to the consultant – two years before his death – chose to continue with the drugs long-term rather than risk more seizures. For the family, Lee’s epilepsy was always there in the background, but it did not hamper him in living life full-on.

Looking back, Vicky and Simon can only speculate about whether Lee might have lived any differently had he known that around 1,200 people a year die from epilepsy according to the charity Epilepsy Bereaved, which raises awareness, counsels families, and funds research into the causes of epilepsy deaths and their prevention.

“Had any of us known, and it is an awful thing to know, we would have started campaigning for more awareness years ago,” says Vicky. “More people die from epilepsy every year than from cot death and Aids put together, yet it doesn’t get talked about, which must be down to stigma.”

Jane Hanna of Epilepsy Bereaved says: “Unfortunately, the majority of people who come to us after a loved one dies say they did not know. It’s a complete lottery whether you’re told or not.” Next week new research will be published showing that deaths among people with epilepsy are on the rise.

The Johnsons are throwing themselves heart and soul into raising awareness, and have gained support from their MP Alec Shelbrooke.

Vicky, a personal banker for LloydsTSB, is still shaky and tearful much of the time, but thinking about what the family can do to help others in Lee’s name is at least giving her a reason to get up each morning.

Simon is now back at work and will, on May 15 (during National Epilepsy Week), run the Greater Manchester 10k race with 50 friends of the family including Lee’s housemates and colleagues.

The target was to raise £2,000 for the charity Epilepsy Research UK, but current pledges total £8,500 and they are now hoping to reach £12,000. A Lee Johnson Memorial Fund is being set up to administer future fundraising.

Lee’s sister Becky, who’s 21 and just completing her degree, has with help from Vicky organised a couple of smaller fundraising events, and on February 24 next year, they are hoping to raise £50k from a grand charity ball in the new Centenary Pavilion at Elland Road in Leeds. “To be honest, we’re astounded we have strength to do this,” says Vicky. “But Lee would smile and say we’re doing the right thing. Somehow you find the will inside yourself, and knowing he’s backing us helps.”

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For information on events organised by the Johnson family contact: [email protected] or call Simon Johnson on 07802 504292

www.epilepsyresearch.org.uk. www.epilepsybrereaved.org.uk. To sponsor Simon Johnson and team in the 10k race go to: www.justgiving.com/teams/leejohnson.