How Grace’s life was interrupted
My daughter Grace was four when she had her first tonic-clonic seizure while playing in her room with a friend. A week later she had another seizure, followed by another while we were waiting for the ambulance. She was admitted to a High Dependency Unit and officially diagnosed with epilepsy.
She was put on antiepileptic medication which changed her behaviour, making her a live wire and unable to settle down at night. We tried many different drug combinations and treatments, but each time Grace’s body seemed to respond for around 8 weeks and then she would hit rock bottom, having seizures every couple of minutes or end up in status epilepticus. I was working full time, but we were spending most of our lives in hospital.
Day and night, epilepsy was constantly interrupting Grace’s life. She would be out of school for long periods, and I would have to take time off work to accompany her on school trips – she wasn’t allowed to go without me. She needed a tube to take medication and her breakfast often went flying in the morning. At one point she couldn’t walk and would lay there on the sofa, having seizure after seizure. She couldn’t talk, she didn’t have the energy to cry, she just had really sad eyes. Our life was on hold and it was as though epilepsy had won. I was told to be prepared for the worst. Nothing can describe that.
How research saved Grace’s life
Eventually, Grace was referred to Birmingham Children’s Hospital and recommended for Vagus Nerve Stimulation (VNS), which can prevent seizures by sending regular, mild pulses of electrical energy to the brain. It seemed scary at the time, but we felt it was the best decision we could make for Grace.