The Collingham 24-year-old, who suffered from mild epilepsy, had just been selected to coach football in the US when he went to sleep and never woke up in December 2010 – he was a victim of Sudden Unexpected Death from Epilepsy (SUDEP).
His parents Simon and Vicky Johnson, and sister Becky, 26, have since campaigned to raise awareness of SUDEP, tackle epilepsy-related stigma and fund research through the Lee’s Smile charity they set up.
They have raised more than £200,000 for good causes including the Epilepsy Research UK and Epilepsy Action charities, supporting initiatives such as bereavement counselling.
Their latest £60,000 Lee’s Smile grant has funded a new video telemetry suite to aid epilepsy diagnosis which was officially launched at Leeds General Infirmary yesterday.
Lee’s dad Simon, 58, said: “It’s a milestone for us today to know that we have got something in Lee’s home city and something that is a lasting tribute for someone who we miss terribly.”
The new ‘Lee Johnson Suite’ has reduced local waiting times for video telemetry, which collates brain and heart data in patients and is used to help ensure people get the right treatment, from two years to eight months.
The advanced equipment has already been used to assess 14 people, finding seven were eligible for surgery that has left most of those patients seizure-free.
Simon added: “We know of people that have died within two years of diagnosis. By reducing the waiting time we are effectively saving lives.”
Lee, a lifelong Leeds United fan who played for the club’s centre of excellence for five years during his youth, had been seizure-free for eight years before he died. Some of his ashes are even buried beneath the Elland Road pitch in front of the Kop end.
Describing his late son as “loyal” and “enthusiastic”, Simon added: “Lee would be amazed at what this has achieved. He didn’t like to be the centre of attention but he would be amazed.”
The family, who were unaware of the potential dangers of SUDEP before Lee’s death, have garnered support from the likes of Prime Minister David Cameron and his wife Samantha, whose son Ivan also had epilepsy and died aged six in 2009, for their fundraising.
Dr Michael Clarke, consultant paediatric neurologist at LGI, hopes the new suite will also strengthen Yorkshire’s bid for a designated epilepsy unit. There are only four designated centres in England, and none are in the North East of the country.
He said: “It does mean we can make a good case with colleagues in Sheffield that we need to be heard and there must be a children’s epilepsy service in the North East.”
Data that emerges from the Lee Johnson Suite will be used by the Yorkshire Brain Research Centre, based in Leeds, as the city continues to push forward in clinical research. There are currently five clinical trials relating to epilepsy taking place in Leeds hospitals.
Linda Pollard CBE, chair of Leeds Teaching Hospital Trust, added: “We are sincerely indebted to the Johnson family for helping to buy equipment which is integral to patient care and to research into Sudden Unexpected Death in Epilepsy.”