On December 12th 2010, our fit and healthy son Lee, aged 24, went to bed and never woke up. The previous day he had secured a job coaching soccer to children in America. SUDEP (Sudden Unexpected Death from Epilepsy) had claimed another life.Despite being diagnosed with epilepsy at the age of 9, Lee achieved so much through his natural sporting ability, his enthusiasm and zest for life, with a smile for everyone he met. Neither Lee, nor us, were aware that epilepsy could kill. Tragically, now we are.We owe it to Lee, and thousands of other people with Epilepsy, to increase awareness of this terrible condition and to raise funds to help research into finding a cure.

Our campaign started in May 2011, when Lee’s dad, Simon, was joined by family, friends and Lee’s colleagues from Kitbag in the Manchester 10k, and over £20,000 was raised in his memory. We’ve no doubt that Lee would have approved of our participation in such a high profile sporting occasion, and will have been smiling as some of us struggled over the finishing line!

Lee’s love of sport will never be forgotten by all who knew him, and both the football and cricket clubs he played for have created memorial trophies in his name as a tribute to the contribution he made both on and off the pitch.

2011 was a year packed with events in tribute to Lee, including luncheons, coffee mornings, sponsored swims and walks, a beer festival, a golf day, a football dinner, a fashion show and bag packing in M & S! In Feb 2012, the “Smile with the Stars” Ball was held at Lee’s beloved Elland Road, an event that was attended by 650 guests and raised over £53,000 in his memory.

Lee’s life was tragically cut short, but his achievements are greater than many of us manage in a “full” lifetime – it’s these qualities that drive us to achieve great things in his memory.

Simon, Vicky and Becky Johnson, May 2012

To make a donation to Lee’s memorial fund, please use the link below or visit the Just Giving page here.

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