Until 11 months old there was no signs that Rebekah was unwell, all her milestones were achieved at the same time as her twin brother Henry. At 11 months old Rebekah had a severe seizure which went on for hours and she was transferred to a specialist intensive care unit on placed on life support.  This was to be the first of many similar trips, during which she underwent many test including painful lumber punctures to try to detect why this was happening. Shortly before Rebekahs second birthday a consultant suggested that we should have a genetic test to rule out SMEI otherwise known as Dravet Syndrome, he also told us that if it did come back as a positive test that it would not be a good outcome. We googled it and could see that as well as the life threatening seizures, there could be eating problems, development delay, problems with mobility and a high risk of SUDEP (Sudden unexplained death in epilepsy). A few weeks later we received a letter in the post confirming that Rebekah had Dravet Syndrome. Over the next few years Rebekah has had an incredible amount to deal with, life can be restrictive for her and Dravet Syndrome affects every aspect of her life but she is a very happy, loving and sociable girl. We want to raise money for Dravet Syndrome UK, as they support families with advice, as well as providing monitors for families - Rebekah is on a monitor at night which alerts us to seizures, so we can administer emergency care, it truly is a life saver. They also fund medical research into Dravet Syndrome.There is currently no cure and prognosis is poor - We really want to help change this. Thank you Annabel x