'The best things in the world cannot be seen or even touched, they can only be felt with the Heart' 

No parent expects to lose a child and the shock of having to do so leaves you numb.  We did not initially know the cause of Charlie's sudden death, but we just knew that we had to make something good out of this devastating situation!  So our journey began - we organised some small local events and donated £2,000 to the Salisbury Hospital Stars Appeal and the Wiltshire Air Ambulance. 

As a family we have been extremely well supported throughout the UK, our campaign has raised in excess of a fantastic £120,000 in memory of our son Charlie Burns.  We have spoken at the SUDEP Action annual Conference, The Houses of Parliament and in June 2014 were invited to 10 Downing Street to an evening reception, representing SUDEP Action.

 

When we lost Charlie we were lucky enough as a family, to be selected to partake in a 7 day holiday that Families Activity Breaks (FAB) provide, ours was in Coverack in the deepest depths of Cornwall.  The week was amazing and we have made some friends for life, all of which have lost a loved one in some devastating circumstances.

Throughout the last 10 years we have continued to raise the profile of SUDEP and pursuing the Ambulance Trust and the Parliamentary Health Services Ombudsman (PHSO), in order to highlight the impact that Sudden Unexplained Death in Epilepsy has, and that 21 lives a week are lost prematurely as a result of it.  Eventually we received a positive response, their outcome was that a training package was to be produced and implemented.  This is called Charlie's Story - The Simple Steps, which consists of a video of our entire story and a set of PowerPoint lessons, all paramedics within the South Western Ambulance Service Trust must cover as a part of their annual training.

In 2019 we reached a point in our lives where we felt that the time was right to start our own charity and so Charlie's Star Charity was launched.