HAMPDEN Park mum and charity founder Marie Baker was delighted to be invited to attend a parliamentary reception at Westminster for Rare Disease Day.
Marie, who runs Dravet Syndrome UK, enjoyed the reception on February 28.
Rare Disease Day is held on the rarest day of the year, February 29, but when it is not a leap year it is marked on the 28th.
Marie travelled to Westminster with fellow trustee and mother-in-law Frances Baker to raise awareness of Dravet Syndrome.
Marie’s youngest daughter Aimee suffers from the condition, which causes life-threatening seizures and learning disability.
Aimee is fed through a feeding tube, has limited mobility and has also been diagnosed as being on the autistic spectrum.
There is no cure for Dravet Syndrome and the condition is considered life-limiting.
Marie said, “It was an absolute pleasure to be part of the day and hear Rare Disease UK’s recommendations and strategies for rare diseases.
“It was also a wonderful opportunity for us to meet with policy makers and other rare disease groups.
“We were delighted to be able to pass on our strategic plan for treatment, support and research into Dravet Syndrome.”
Eastbourne MP Stephen Lloyd added, “It was a privilege to meet Marie Baker and hear all about Aimee. Dravet Syndrome is a rare condition but a profoundly debilitating one.
“Marie and her mother-in-law, Frances, started the charity two years ago and I was delighted to welcome them to parliament.”
To find out more, visit the website www.dravet.org.uk.