I am mum to 7 year old twins Rebekah and Henry, and we live in Norfolk along with my husband Haydn.
Rebekah has Dravet syndrome and has had a positive test for a mutation in her SCN1A gene. Rebekah and Henry both attend a mainstream school in Norfolk.
I attended the IDEA league (now Dravet.org) global conference in Chicago during 2007 to find out more about Dravet syndrome and to meet other Dravet families.
Since then, with the UK charity being formed, we have been fundraising (golf days and many other events) to raise funds for research into Dravet syndrome, and as a family continue with this as our aim. Knowing how much research is currently going on into Dravet syndrome gives us a lot of hope.