Sad news

We got some sad news this morning.

One of the children on our Dravet support group, 8 year old Scott from USA, died from suspected SUDEP yesterday afternoon. He was a happy boy, always smiling and looked so full of life in the photos his dad posted on our website. I don't know any details but we had not heard he was particularly poorly or having a rough time with seizures (well no more than usual) and so it must have been very sudden just as it has been for many of the other Dravet children who have died from SUDEP.

Scott is the 10 th child on our Dravet group to die in recent years. My thoughts and prayers are with his parents and whole family. I don't think he had siblings so this will be all the more devastating for his parents.

We, the parents of Dravet kids, know the mortality rate for this catastrophic syndrome but we never think our child will be one of the statistics. I am sure we will all give them an extra hug today.

Scott and our other precious Dravet angels: Tessa, Eileen, Tyler, Adrian, Nathan, Kevin, Charlotte, Amelie and Brianna, are all free of seizures and at peace from their daily struggles. I think this is the only consolation for their grieving families.

God Bless them all.