Vicki and Poppy's story
Poppy Evans has a neurological condition called Dravet Syndrome that causes epileptic seizures.
This is a neurological condition that causes intractable seizures. Although Poppy had her first seizure at six months old, she was four before Dravet was eventually diagnosed.”
Poppy’s Mum, Vicki
Poppy has tonic-clonic seizures, but it’s not common for people with Dravet to have the one seizure type which makes diagnosis harder. In addition to having tonic –clonic seizures, Poppy also has autism and ataxia.
The condition impacts on every aspect of family life, not just Poppy’s. I’m scared to go out in case Poppy has seizures. I can’t work as I need to be around and we rarely get babysitters as they are scared in case Poppy has a prolonged or cluster of seizures that they can’t cope with.
It’s no exaggeration to say epilepsy impacts on everything I do; I can’t even peg out the washing for fear of missing a seizure and Poppy hurting herself. I can’t remember how many times Poppy has been admitted to hospital following accidents.
Vicki
Poppy started off in mainstream education but now attends a special school, which is an hour away from home.
Poppy initially attended a mainstream, but each time she had a seizure Vicki had to collect her. Poppy was also a disruption for the other kids so was often taken out of the classroom
We have lost many friends, and gained new ones that understand our situation. Our family has been good on the whole.
It’s not the end of the world, just an unexpected change to your expectations. Get advice from other people in similar situations. Do your own research into the condition and build relations with your professionals. Remember that parents are the experts on their own kids and try not to panic.
Vicki
Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).