On the 12th December 2010 my cousin, Lee Johnson, went to sleep and never woke up.
Me with my cousin, Lee Johnson
Lee died from SUDEP (Sudden Unexplained Death in Epilepsy) at the age of 24. He was an incredible young man who lived his short life to the full. As a child, he played for Leeds United youth team alongside James Milner, a position he had to give up because of his condition. He continued to play for his local team and was also an outstanding cricketer. His passion for sports was well known. Lee had successfully undergone a soccer training assessment course that was to be the start of the next stage of his life – as a soccer coach on the West Coast of America.
Neither Lee, his parents Simon and Vicky or his sister Becky knew that Epilepsy could take a life. Lee’s death touched so many people and following his premature passing, a campaign to raise awareness of Epilepsy and reduce the stigma surrounding the condition was launched.
Running the Stratford Half Marathon for Epilepsy Research UK
This campaign soon developed into the creation of Lee’s Smile – a lasting tribute to Lee’s achievements in his short lifetime, and a charity that aims to use research and awareness to get the answers that will save lives. We hold numerous charity events across the country and take part in many fundraising activities, from the ‘Smile with the Stars Gala Ball’ held in 2012, which raised £83,000, to Sunday morning coffee and cake events that raise £600. The current total raised for Lee’s Smile is £200,000!
Plenty of events have been held across the UK in Lee’s memory.
The money raised has enabled a suite of rooms to be opened at the LGI Hospital in Leeds, in Lee’s memory, where epilepsy patients can be monitored, and the research used to help other sufferers.
My aunt, uncle and cousin unveiling the plaque at LGI Hospital
We know that Lee is smiling down on us and watches over the charity work our family and friends participate in. Today is the fifth anniversary of his death and I wanted to share his story with you and show everyone that Lee lives on in all of us, so please remember to keep smiling.
Take a look at the website for more information on the fundraising we do, links to epilepsy support groups and more, including a video from the Smile with the Stars Gala Ball.
Shelley Wilson Author 