Baz and Jan Burns, parents of 2 beautiful children, a happy and thriving family until 11th October 2011 they experienced the devastating and unexpected loss of their normally perfectly healthy ten year old boy. Their story is tragic in the extreme and something, they as a family, will live with for the rest of their lives. However, out of a place of deepest despair, Baz and Jan were determined that Charlie’s life would never be in vain… and so in 2019 ‘Charlie’s Star’ was born. ( Full details of their story can be read at www.charliesstar.org
Following Charlie’s death, they were instrumental in the launch of the National Epilepsy Deaths Register, where Jan addressed the Houses of Parliament. They attended an evening reception at 10 Downing Street hosted by Samantha Cameron. They were also invited by the Rt Hon Earl Howe to join a Luncheon at The House of Lords, to recognise their charity involvement.
Charlie’s Story was used in a campaign by SUDEP Action called the Wearable Apnoea Detection Device (WADD). This is where their fundraising efforts were directed over a 3-year period. They were extremely proud when the European Research Council (ERC) awarded the WADD €2 million for its development!
Over the years, as a family they are extremely proud to have been nominated and received various awards including ‘Fundraisers of the Year’ at the Spire FM Local Hero Awards as well as the Prime Ministers ‘Points of Light award from Boris Johnson.
In April 2017 Charlie’s Story – Simple Steps training videos and teaching pack was released by SWAST across their region. Jan and I were invited to present the 1st live training session, which was at Plymouth University. The training pack consists of a series of videos and accompanying PowerPoint presentations. Due to its popularity the training was also presented by us at the NHS Training Managers Conference in Bristol. Again, it was extremely well received, so much so that Jan and I along with SWAST were invited to London to meet with The Patients Safety Council.
We are extremely proud to let you all know that because of these meetings and presentations, every Ambulance Trust across the UK are using Charlie’s Story – Simple Steps, reaching over 22,000 ambulance staff across the entirety of the UK. In addition to this the training has developed into an E-Learning Package by The Patients Safety Council, mandated for all 20,000 paediatric consultants, doctors and epilepsy specialist nurses.
In 2019, they launched Charlie’s Star Charity, to ‘Create Hope and Smiles’ for bereaved families who live in the Southwest of England, that have lost a child under the age of 19, by providing them with a fully funded 7-day respite break in Cornwall.
In September 2026, Carers Break CIC decided to support ‘Charlie’s Star by purchasing 2 weeks of repite holidays at their wonderful facility near Newquay in Cornwall.
Carers Break intend to raffle one week and auction the second in the coming weeks and months. That way Charlie’s Star benefits twice.
Check out our Social Media for more information as it is released.
https://www.facebook.com/p/Carers-Break-CIC-61551784067276/
