Dravet Syndrome Stories From Those Who Know

Ella-Rose: Dravets And How My Daughter Has Been Diagnosed

by Nick Hare

Today is the day after being informed that our beautiful little girl has dravet syndrome. We are devistated. Ella-Rose is a beautiful 23 month old girl how has the sweetest personallity any parent can wish for. We were 1st aware of her seizures at 11 months, since then they have progressed and we have constantly been in and out of hospital trying this drug and that drug. Our doctors really didn't know what was happening with her. Like most parents we pushed and pushed for her to get the best treatment possible branding us as pushy parents. Till one doctor finally recognised the symptons but wasn't prepared to assume until the tests came back. We discovered yesterday that Ella-Rose was actually having seizures in side the womb which my wife put down to baby moving discribing them as hicup momments. We never thought anything more about them. Ella-Rose arrived and was a perfectly normal healthy baby till 11 months. My wife is also 6 months pregnant with our 2nd child and obviously her emotions are jumping from guilt about Ella-Rose`s condition and could it also effect our child to be. I have read a lot of stories on how this syndrome effects people in differing ways and my heart goes out to all famillies who now and have found themselves in this situation. If anyone out there can help with info in any small way how we can help Ella-Rose in the coming years we will be happy to read. I wish 1 and all a very merry christmas and good 2010.

Nick Hare nickjhare@hotmail.co.uk

11th December 2009. Submitted by Nick Hare.