Hello, I am Mum to Amy 24, Ellie 21 and Louie 13. My daughter Amy was born in April 1995, she had her first seizure at just 8 weeks. That was the beginning of our journey.
Life was very difficult in those early years and back then there was no Dravet Syndrome UK for support. There was a huge lack of information about Dravet Syndrome available at that time. We were very isolated for 16 years until I searched the internet again, found DSUK and our lives really did change. We suddenly had access to knowledge about Amy’s condition and were given the opportunity to finally meet other families also affected by Dravet Syndrome. This had a huge positive impact on the whole family including my other two children.
I soon became involved with the charity as I was keen to give something back and wanted to help reach other families just like mine. I became a committee member in 2012 and then a Trustee in 2014. I am incredibly proud to be a part of such a dedicated team and all that the charity has achieved.
I have seen a huge change in the Dravet world since Amy was diagnosed at the age of 3. More children are receiving a diagnosis much sooner and therefore receiving the right treatments and more adults are now receiving a diagnosis. There is a wealth of knowledge available to both families and healthcare professionals compared to 20 years ago! And any new families who find DSUK have access to fantastic support right from the start. Of course, there is still some way to go in fully understanding Dravet Syndrome and the comorbidities that accompany it, but as a charity we continue to work incredibly hard to improve the lives of all those affected.