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‘Hero’ mum nominated

A mother whose son died following two massive seizures a year ago was nominated for “fundraiser of the year” as part of a Local Hero Awards competition.

But Jan Burns, whose son Charlie died just days after his 10th birthday in October last year, was narrowly pipped at the post for the accolade, which is given to people who make Salisbury and the surrounding area a better place to live.

Instead, the award was won by the Winterslow Calendar Girls, whose novel way of fundraising was so successful they were able to donate over £17,000 to the Breast Care fund of the Stars Appeal at Salisbury District Hospital.

Jan, who with her husband Barrie, has worked tirelessly to raise awareness of SUDEP – Sudden Unexpected Death in Epilepsy – the silent killer that claimed her son, said she was just “delighted” to have been nominated in the competition.  

“If the small things we are doing stop some other family going through our experience, then we will have achieved something and Charlie won’t have died in vain,” said Jan, a customer service manager from Larkhill, Wiltshire.

“As a parent you’ll do anything for your children, and while Charlie is not here anymore, I cannot rest until we’ve done everything possible to change people’s antiquated thoughts and feelings about epilepsy.”

SUDEP claims 500 lives in the UK each year – more than AIDS and cot death combined – yet few people have ever heard of it.

Charlie had his first ever seizure on Friday, October 7, last year, but after being checked over by paramedics, seen by his GP and referred to a neurologist, the youngster was found dead in bed by his devastated parents four days later.

Since then, the couple, and their daughter Isabella, 15, have raised £10,000 through bag packs, a sky dive and many other activities for Epilepsy Bereaved, the only UK charity dedicated to SUDEP and other epilepsy related deaths.

The family’s plight has touched Claire Perry, MP for Devizes, who used a Commons debate to call for a review of the guidance medical professionals receive to help them look out for seizures in otherwise healthy children.  She has also called for the introduction of a national standard register of epilepsy deaths to highlight the scale of the problem.

The annual Local Hero Award, sponsored by the Salisbury Journal and Spire FM, gives recognition to people who have never received a public “thank you” for all the work they do to help others and their communities.