'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.
Once we were given the cause of death by the coroner as Sudden Unexplained Death in Epilepsy (SUDEP), we were on a mission - to raise Awareness and funds for SUDEP Action. We put every minute of our spare time into fundraising and organising events in our local area of Salisbury. Both the Salisbury Journal and Spire FM Radio worked extremely hard for us by advertising every event that we were engaged in and followed our journey throughout our 7 year campaign.
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. The Rt Hon Claire Perry MP, has supported us throughout and has become our charity Patron.
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. In 2014 we decided to do something in order to ‘pay back’ a charity that helped us as a family. Baz organised and took part in a 453 mile road cycle from Whitby, N York’s to Lewes, South Downs. The cycle event was a great success and raised £4,000 for them.
In 2015 we spent most of our time fighting for our campaign by means of Jan confronting her fears as she skydived from 13,000 feet above Netheravon in order to raise a fabulous £4000 in the summer. This was followed by our first Charity Ball and Auction, 150 people attended the black tie event and we raised a fantastic £10,000. This money was perfect timing as it gave the 'green light' for the SUDEP Action to progress their Wearable Apnoea Detection Device (WADD) project to the next testing level. This project has now secured €2million to allow them to progress to a prototype.
Throughout this time as a family we were still pursuing the Ambulance Trust and eventually the Parliamentary Health Services Ombudsman (PHSO) produced their report and findings. Their key outcome was that a training package was to be produced and implemented. This was called Charlie's Story - The Simple Steps, which consists of a video of our entire story and a set of PowerPoint lessons, which all paramedics must cover as a part of their annual training.
We have now reached a point in our lives where we are able to start our own charity and this will be launched on the 6 April 2019 with an 80's Icon's Fancy Dress Party. We are looking forward to moving the charity forward in order to support families that lose a child, in order to provide them with the opportunity afforded to us.