April 1994

Zoë was a happy healthy baby until a trip to Somerset at Easter when her brother and sister noticed her stiffening up and staring as they sat with her in the back of the car. Afterwards, it always seemed that she had these strange seizures in her car seat. We wondered if it was the metal frame of the seat causing a kind of Faraday effect, so we borrowed a polystryene one (not allowed in 2021!) and that seemed to help. However, she began to have seizures in her buggy too.

It was difficult for our GP, Dr Keast, to say what was causing them at first, as she never had them when I took her to see him. The next week, I took in a video of her so all the doctors could have a look at their break time. Still no answers.

One day, whilst out shopping in the buggy, she began to stiffen and stare, so I took her straight round to the surgery. The doctor on duty thought she might have meningitis and called an ambulance (the first of many) so she could be taken to hospital for a lumbar puncture. I wasn’t allowed in and it was terrifying to hear her screams as I stood and looked out of the window.

It wasn’t meningitis, but she was kept in overnight and I was allowed to stay. My husband, Gordon, brought in some pizzas and we shared them with another family whose little girl, Zoë’s age, had cerebral palsy. As good fortune would have it, we met up at a mutual friend’s house, and Helen became a very good friend of Zoë’s, especially at secondary school.

On visiting Dr Keast again, to discuss our hospital visit, I mentioned that Zoë had a mysterious white patch on her leg. ‘Ah,’ he said, ‘Seizures and white patches. That sounds like she has Tuberous Sclerosis.’

And that was the beginning of Zoë’s Journey.