I have a wonderful husband and three beautiful children. Chloe is almost six, and we have three year old twins, Alyssa and Laughlin.

Chloe had her first seizure at fourteen months old. At that age it is often a febrile seizure, but Chloe’s seizures continued. At times she had complex partial seizures, other times convulsive tonic clonic ones. We have a great paediatric neurologist, and I feel it’s important to get the best medical specialists you can, one who listens to you, and gives you time to discuss what is worrying you.

Her seizures have progressed and are quite uncontrolled now, and she has some speech problems. After years of being unsure quite what form of epilepsy she had, the specialist now thinks it is probably a rare but serious syndrome, called Dravet’s syndrome- named after the doctor who identified it. This is of course a blow, but we cope alright, have accepted the diagnosis, and Chloe is now going to a very nice Special School, which we are happy with.

At fourteen months of age, Alyssa- had three febrile seizures while sleeping. She is now three, and we are not sure if she has epilepsy also, or if they were just infant seizures. Whatever it is, it’s different to the form that Chloe has, which is good. Laughlin her twin brother is fine.

I found Epilepsy Queensland to be very supportive, they came to both Chloe’s early childhood centres, to talk to the staff about epilepsy, to allay their fears and help them understand it better.

I think knowing you are not alone is important, and it can be helpful to talk with other parents who also have children with epilepsy. Another thing I think is important is how siblings feel. Because it does affect them, for better or worse. I have just read a helpful book called “Siblings” which made me more aware of how siblings cope, when one child has chronic health condition, such as epilepsy. I would like to see a support group for siblings.