Ollie Johnson tragically passed away on 27th December 2013 at just 2 years 8 months old. Ollie’s parents, Sarah and Stephen, and their family and friends had already raised a lot of money for Dravet Syndrome UK through various fund-raising activities. But since the terrible loss of their beautiful boy they have continued to raise well over £7,000 in his honour. Even in the depths of their grief their thoughts were for the other Dravet families.
When Ollie was first diagnosed with Dravet syndrome the Johnson’s were provided with a pulse oximeter by DSUK to monitor his night-time seizures. The monitor not only gave them the peace of mind that they would be alerted to seizures, but also detected that Ollie had a heart defect and subsequently needed a pace maker. Sarah and Stephen would like the money they have raised put towards providing monitors for other families in the same situation they were in. In response to this, and to further his memory, DSUK have set up an Ollie Johnson Memorial Fund that will supply pulse oximeters, video monitors and Emfit monitors to Dravet families.
Sarah and Stephen’s families and friends have chosen innovative ways to fundraise on behalf of Ollie. One couple shaved their heads on Valentine ’s Day, another is growing his hair for DSUK only to have it all shaved with the DSUK logo in a few weeks. There have been charity football matches and Ollie’s 8 year old cousin is running a mini mile marathon.
Sarah says “Ollie inspired everyone he ever met. His smile lit up every room he entered. He made us the parents we are today. He taught us to appreciate the small things in life, and live every day to the full. We as his parents did everything we could to protect him, but he never regained consciousness from the 3 hour long seizure he had on Christmas day. We want to keep Ollie’s memory alive and continue with our fundraising and raising awareness of Dravet syndrome. We hope to be able to help many other families keep their children safe with monitors.”
Sarah and Stephen are determined to continue raising awareness of this life-limiting condition and as well as generating lots of news articles they continue to raise awareness with their Facebook page ‘Ollie Johnson is Living with Dravet Syndrome’. If you haven’t already please take a moment to visit their site.
Despite all of Ollie’s health setbacks, he was a very happy, loving boy who lit up the room with his presence and enjoyed every minute of his short life. DSUK would like to take this opportunity to thank the Johnson family for all their support and their impressive efforts to raise awareness of Dravet syndrome.