While reflecting on our progress so far, I realised that we did not emphasise the frightening face and the severity of Dravet Syndrome, and I will now try to amend that.
To put it as simple as possible: DRAVET KILLS.
There is a thing called Sudden Unexplained Death in Epilepsy (SUDEP), which is pretty self-explanatory, it refers to those deaths that occur to epileptic patients in the absence of another obvious cause of death. The SUDEP incidence in normal epilepsy is pretty high to begin with (15-20% of the deaths in epilepsy are caused by SUDEP). Well, just to be a story topper, the SUDEP risk in patients with Dravet Syndrome is higher!
There is another thing in epilepsy called status epilepticus, which basically means a seizure lasting longer than 30 minutes. This is a medical emergency because the longer a seizure lasts, the less likely it is to stop on its own. To be even more awkward, any seizure can become status epilepticus. And, again, mighty Dravet is known for its prolonged seizures!
What Dravet is also good at is to be resistant to anti-convulsive medicine. Which means that there is no way to keep seizures under control, and each seizure could turn into status epilepticus.
Now let's drop all this medical jargon and just imagine for a second that YOUR child is suffering from Dravet Syndrome. There are two things you know for certain:
1. there will be another seizure; there always is.
2. the next seizure can be a prolonged seizure that may or may not cause brain damage or even worse, that might not stop until the child's heart stopped beating and they stopped breathing.
Imagine having to live with those two certainities day, after day, after day. Imagine the terror you would go through if your child would start seizing. Some of the children affected with the syndrome have seizures EVERY DAY. Imagine waking up every single day wondering 'Will it stop today?' Imagine seeing your child, a tiny little human being, moving their limbs uncontrollably, and you just stare at them, seeing their suffering and knowing you cannot do anything to stop it. Just imagine all that? How did it feel?
Now you can breathe a sigh of relief, knowing that it is not you. However, this could be any one of us. Dravet strikes at random! Yes, it's a genetic mutation, but no one in my family had any type of epilepsy. The closest we came to epilepsy was when I (Carmen) had a febrile seizure as a child; 1 - that was it. So, there was no way of seeing this coming. There's no way to tell who is going to be Dravet's next victim either.
So please don't ignore us; the worst thing you can do is ignore it. Make a donation, give us a share, spread the word about this horrible, horrible disease and together we stand a better chance of finding Dravet's weak point!
There is one last thing I want to share with you today. I want to talk to you about a little girl named Clover (click here and here to see her story). Baby Clover was diagnosed with Dravet Syndrome in 2010. She has had it rough. Her first ever seizure lasted a long time and ended up with her needing to be intubated (she was only 6 months old). Since then, she had many many bad seizures. A few days ago, she had a prolonged seizure which lasted TWO HOURS. It caused intensive brain damage and left her unable to breathe on her own. Last night, Clover passed away. She would have been 4 years old this June.
Rest in Peace Clover! Our thoughts go to her family, we are very sorry for your loss!
If you want to leave her family a kind word or make a tribute for little Clover, you can do so here!
Dravet kills, it's only fair we do our best to kill Dravet.