A lot of friends and family have helped to raise thousands of pounds for Dravet UK, the charity that supports us and other families.
The charity works hard to promote awareness of Dravet Syndrome and has produced some excellent leaflets that help us when talking to ambulance crews, doctors, social services etc.
More importantly they provide life saving equipment to Dravet familes, we have a bedside Pulse Oxomiter that we use on Toby to measure his heart rate and blood oxygen level and is a good indicator of seizure activity. This bit of kit is £1,000, to be given this is amazing.
Last week Dravet UK announced that they would supply small versions of the same bit of kit for when you are out and about. No forms to fill in, no complex interview questions, if your child has Dravet you can get a fingertip monitor to help you, fantastic!
There is a closed Facebook group for Dravet UK where a lot of parents have posted their thanks for these fingertip monitors, I’ve posted some of them below so you, as someone who has helped to fund this bit of equipment, can see just how valued your donations are.
Thank you on behalf of all Dravet families.
Names deleted for obvious reasons!