Tag Archives: Epilepsy

Smile with the Stars – in Memory of Lee Johnson #Epilepsy #LeesSmile

On the 12th December 2010 my cousin, Lee Johnson, went to sleep and never woke up.

IMG_4297Lee died from SUDEP (Sudden Unexplained Death in Epilepsy) at the age of 24.  He was an incredible person 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 which was to be the start of the next stage of his life – as a soccer coach on the West coast of America.

His death touched so many people. Neither Lee, his parents Simon and Vicky or his sister Becky knew that Epilepsy could take a life. Following Lee’s premature passing, a campaign to raise awareness of Epilepsy and reduce the stigma surrounding the condition was launched. The 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, but the highlight has to be the ‘Smile with the Stars Gala Ball’ held in 2012, which raised £83,000. The funds are used for research into epilepsy and financially supporting the fantastic work done with the LGI Hospital (Leeds General Infirmary).

If I can take any lesson from Lee’s passing, it would be to make the most of life. He crammed more into his 24 years than most of us could dream of. He travelled, loved and lived without letting his condition hold him back. He is my inspiration.

My family have made the courageous decision to hold a third ‘Smile with the Stars Ball’ which will be held on Saturday 30th June 2018 at Elland Road, Leeds.  The amount of work that goes into putting such an incredible evening together is overwhelming and yet they pull it off with grace, determination and of course – with a smile!

If you would like to read more about the amazing fundraising events or would be interested in attending the Ball or donating to this cause, then click on the link below and please take a look at Lee’s Smile website HERE.


Thank you so much for taking the time to read this post.  Losing someone you love is something most of us will have to go through at some point in our lives. Each experience is different and personal to us. There are many charities who specialise in providing support and grief counselling.  Our loss can be more painful at this time of year.   If you are struggling with a bereavement or would welcome someone to talk to then contact Cruse.

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