THE family of a 10-year-old boy who died suddenly in October 2011 will meet health secretary Jeremy Hunt to discuss how to prevent future “needless” deaths.

Charlie Burns, from Larkhill, died from sudden unexpected death in epilepsy (SUDEP).

Since his death, Charlie’s family say they have been fighting to get justice and believe their son was misdiagnosed.

Mum Jan said: “We remain busy with appointments at high level in order to get justice for the misdiagnosis Charlie received during his first seizure. We are certain that had he been taken to hospital that night, Charlie would still be with us today.”

The family say they have received a “series of appalling responses” from NHS organisations following the death of Charlie. And they feel they have been “fobbed off” by the Care Quality Commission and Parliamentary Health Ombudsman. An independent investigation was carried out by Great Western Ambulance Service.

On October 7, 2011, Charlie had his first seizure but ambulance staff diagnosed him with a febrile convulsion and did not take him to hospital.

Four days later Charlie suffered a second massive seizure, and died.

The meeting with MP Mr Hunt will take place next Wednesday.

Jan said: “The appointment will be to discuss positive changes that can be implemented to stop needless deaths and stop other families enduring additional heartache when they have lost a loved one.

“There are hundreds of families across the country in a similar position and things must improve for the better.”

n A charity ball and auction was held in memory of Charlie last Saturday (October 3) – raising £10,000 for SUDEP Action. The Sunflower Ball was held at The Stones Hotel, High Post, and was attended by 150 guests.

The family has been helping to raise awareness of the condition and has raised £48,000 for SUDEP Action.

Jan said: “As parents ourselves, we have a duty of care to warn people about SUDEP. I would never forgive myself if I could have prevented another tragedy, another family being torn apart, and I had sat on my backside and done nothing.

"Please believe me when I say this can and will happen again. Nearly four young people are losing their lives to SUDEP every day, and on average one person in 100 will suffer with Epilepsy in their lifetime.”