My seven year old daughter, Tayla has a very rare epileptic syndrome called SMEI – or Dravet’s syndrone – so she has very uncontrolled and frequent seizures, and an intellectual disability.  These are some of the things I have learnt.

• Don’t always assume the doctor knows everything.

• If you have questions write them down before you go

• If you don’t understand what the doctor tells you – ask again

• Either write down what the doctor says, so you will remember it, or take someone with you who will help you to remember

• Don’t worry about asking “stupid” questions – if it worries you, ask

• If your child has uncontrolled seizures, take it a day at a time

• If this doesn’t work, try one hour at a time

• Cherish and make the most of the  good times