1995 to 1997

Here are the two photos Zoë talks about when she is twenty-six. Anyone else would just see a cute little girl in a ballet costume, or one peeping from behind a toy car, but she sees only that she has a clear face with smooth skin. She says she ‘felt pretty and free’.

Zoë’s toddler and pre-school days were carefree for us all. Her epilepsy seemed to have stopped. However, one morning soon after her diagnosis with TS, our Health Visitor phoned. I had just got back from shopping and I had popped a sleepy Zoë in her cot whilst I put things away. The Health Visitor was only phoning to help me; she’d found some information about Tuberous Sclerosis. But I couldn’t bear it as she read through the list of all the organs of the body that can be affected, as I shoved the food in the cupboards . I couldn’t believe it. All this could not be going to happen to my beautiful little daughter who was sleeping so peacefully in her room.

The months and years went on. She enjoyed toddlers. She went to a wonderful childminder who encouraged her with arts, craft, stories and singing. She started pre-school and made lots of friends and they all went to ballet and swimming together. It wasn’t until 1998 that she started school and things gradually began to change.