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Charlie’s Star Charity

1534. Jan Burns
1535. Barrie Burns

Jan and Barrie Burns, from Cornwall, founded ‘Charlie’s Star Charity’ in 2019 to provide respite breaks in Cornwall for families in the South West who have lost a child, in memory of their son Charlie, who died from Sudden Unexpected Death in Epilepsy (SUDEP) aged 10 in October 2011.

Jan and Barrie Burns

After Charlie’s death, Jan and Barrie and their family were able to partake in a seven-day holiday in Cornwall provided by the charity Families Activity Breaks (FAB), and were inspired to help give back towards the charity through a series of fundraising challenges, before deciding in 2019 to launch their own dedicated service. They have also raised over £100,000 for ‘SUDEP Action’, alongside £20,000 for other charities including FAB, and worked with the South Western Ambulance Service NHS Foundation Trust to create a package of training for paramedics and other healthcare professionals to understand and identify epilepsy risk factors including those associated with SUDEP in order to help minimise the risk to future patients.

In a personal letter to Jan and Barrie, Prime Minister Boris Johnson said:

“I am lost in admiration for your service to others through ‘Charlie’s Star Charity’.

“You are doing a wonderful thing by giving bereaved families short breaks across Cornwall. You are also preserving the memory of Charlie with such kindness and generosity.”

Jan and Barrie said:

“We are truly humbled to be recognised by the Prime Minister and to be awarded a Points of Light Award. Following the sudden and unexpected loss of our beautiful little boy Charlie we vowed that some good must come from our awful tragedy.

“Our lives changed forever, and we quickly realised we could make a huge difference to the lives of many other people. Charlie’s legacy lives on through us and we are able to provide bereaved families who have lost a child some valuable time away to grieve and learn to smile again whilst creating new memories.”

Below: Jan and Barrie’s son Charlie

Charlie Burns

See more about ‘Charlie’s Star Charity’

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