A HAMPDEN Park mum who set up a charity to help youngsters like her daughter has received her second research award.
The locally run national charity Dravet Syndrome UK was established in January 2009 by Marie Baker, whose daughter Aimee has the condition.
Aimee, who is now six, was diagnosed with the life-limiting condition when she was just nine-months-old.
Dravet Syndrome causes very hard to control seizures and learning disability.
Marie said, “Aimee currently has around three seizures a week which, for a child with Dravet Syndrome, is considered to be very good seizure control.”
Aimee, who attends the South Downs Community School, has limited mobility, no speech and is tube fed.
But according to her mum, she remains a happy and carefree little girl who loves nothing more than cuddling up with her family or playing on her touch screen computer.
Marie said, “Aimee was so very poorly when she was a baby and starting the charity just seemed like a good way to turn a heartbreaking diagnosis into something positive.
“We don’t know how long we have Aimee for, so we are determined to make her life as happy and positive as possible while helping other families in our position.
“The charity is all about making life better for those affected by Dravet Syndrome.
“We fund pulse oximeter machines to monitor children in their sleep, we provide information to families and professionals, along with gatherings and meet ups, and we fund research in the hope that we will one day find a cure for this devastating illness.”
This latest research grant is for £30,000. This has been awarded to a team of doctors looking into the biological causes of seizures for those with diagnosed with Dravet Syndrome, but who don’t have the typical genetic mutation.
The hope is that the results will provide doctors with a greater degree of certainty when giving both the diagnosis and prognosis at an early age.
This is the second research grant awarded by the charity within the last eight months and on top of the research awards Dravet Syndrome UK have agreed funding for a research administrator to work with Dr Sameer Zuberi at Yorkhill Hospital in Glasgow, where the genetic screening for Dravet Syndrome takes place.
Marie said, “We are absolutely delighted to have been in a position to fund research projects totalling £100,000.
“While we continue to work with our families and the professionals on a day to day basis we understand the need for more knowledge and research into this very underfunded and misunderstood condition.”