George’s story starts with his birth on May 1st 1997. He was a normal healthy beautiful baby; nothing to really worry about, other than having jaundice. A week extra in hospital with light therapy and we were home. Over the next couple of months we noticed that he would startle in his sleep, we just thought that was a normal new born thing. Looking back I feel that was the start of a very long road. At around 3 months old he would have what we called “staring” episodes. He would turn his head as if trying to see something behind him, But we could not get him to look forward; this happened a couple of times. I talked to our health visitor who assured me it was nothing.
At 6 months old he had his first seizure. This was such a shock both my husband and I worked as paramedics for The London Ambulance Service. But this was our baby we didn’t know what to do. We drove him to the local hospital where he continued to fit for over an hour. They were convinced it was febrile. Over the next few months we ended up back in the hospital on numerous occasions. George’s seizures lasting over an hour, still no one telling us what was wrong. All test results coming back “normal”. By the time George was three and a half, we had had enough. He was on 5 different medications, could hardly talk his behavior was horrendous. He was having 100’s of myoclonic seizures daily and numerous seizures lasting anything from 20 minutes to an hour and half.
It was Christmas 2000 and we stated to research epilepsy and alternative treatments. we found out about the ketogenic diet, read the books and contacted Great Ormond Street Hospital, our heart sank when they said it was about a 3 year waiting list. George had almost died, and still could, and they expected us to wait. We found a hospital that would treat him straight away. It was in Dallas Texas! We went into over drive and raised enough by fund raising to take him there. 3 months later we were on a flight there. With our 6 week old baby daughter too! The diet worked really well for him, it stopped all the myoclonic jerks and the seizures reduced down from 40 really big LONG seizures a month down to 12 a month. Only lasting 30 seconds to a couple of minutes.
We reduced him off all meds and he continued to do well. 2 1/2 years later we weaned him off the diet. He continued to do well and seizure activity remained the same. Last year a doctor saw him an asked if we wanted to have a blood test on him to see if it was genetic, we said ok and 6 months later we had a diagnosis of “Dravet Syndrome” We couldn’t believe it. Reading up on the information and websites we found it was like reading his life story. George is still a menace, and has trouble with his balance as his feet turn inwards slightly, all part of the syndrome. There has been so many wonderful experiences that we have had with because of George, but we live in the hope of a cure one day, but wouldn’t change any part of our life with George. He has brought us tears and laughter worry and hope… and because of him we have meet and become friends with the most wonderful families from all over the world.