£40,000 research fund for charity

Aimee suffers from the life-limiting Dravet Syndrome
Aimee suffers from the life-limiting Dravet Syndrome

A CHARITY set up by a Hampden Park mum has awarded its first grant of £40,000 to a team of neurologists for research.

Eastbourne-based charity DRAVET Syndrome UK was created by Marie Baker, whose five-year-old daughter Aimee suffers from the rare life-limiting disorder which causes seizures.

Marie set up the charity, to help improve the lives of those affected by the syndrome, in 2009 and it has gone from strength to strength. She runs it from her Hampden Park home with her mother-in-law Frances and two other Dravet mums.

Marie says she is delighted her charity is now able to fund some research in to the condition. The £40,000 they have put forward will pay for a project which will look at both children and adults with Dravet Syndrome, and look at children who have died from the condition.

Marie said, “There is so much we need to learn about Dravet Syndrome to enable professionals to make correct diagnosis and give families an accurate prognosis. Dravet Syndrome has a higher rate of SUDEP (Sudden Unexpected Death in Epilepsy Patients) than regular epilepsy and it is essential that we start to understand the causes and variants of Dravet Syndrome in order to better treat patients.

“This project shows true collaboration between paediatric and adult neurology services and involves Great Ormond Street Children’s Hospital, King’s College Hospital, Royal Hospital for Sick Children in Glasgow and The UCL Institute of Neurology.”

As well as funding this latest research project, DRAVET Syndrome UK continue to fund pulse oximeter machines for children, which monitor heart rate and oxygen levels throughout the night and alert families to seizures. The charity also raises awareness within the medical profession by supplying literature and attending conferences and seminars.

But Marie says family support is also an important part of the charity’s work.

To find out more about Dravet Syndrome or help the charity visit www.dravet.org.uk or email Marie at marie.b@dravet.org.uk.