George sadly passed away aged 19 years old. His mum, Debbie, shares more about him.
George. I don’t want to focus on the thousands of seizures and emergency hospital admissions he endured, but rather focus on what an amazing young man he was and on the memories we made with him during the wonderful 19 years we were lucky enough to have together.
George was a real character. Greeting everyone he met with a tickle and a “hello lady” or “hello man” he would seek out what we called the weakest link in a room and charm that person into doing whatever he wanted them to do. There were times when he was young that it was easier to hide away in the safety of our home when his behaviour would erupt, away from the stares of strangers.
One day I decided we were going to embrace George and all of his quirks and just travel, and have fun.
Though he didn't really have a clue what was going on, George went to the Isle of Wight festival every year. We travelled to the South of France on numerous holidays and also went to Disneyland Paris, as well as holidays around the UK.
We applied to the charity, Dreams Come True, and were granted a magical trip to Disney World, Florida. George couldn’t believe it! On meeting Woody and Buzz, he tried pressing the button on Buzz Lightyear's arm. thinking it was the same as his toy! Then he shouted “Buzz not working, need to go the battery shop!”
I understand that to travel anywhere with a child living with Dravet Syndrome is a very scary thing to do. We were lucky that nothing happened during these trips other then lots of fun memories being made.
George helped save the lives of hundreds of children with severe epilepsy. This was only really known after he passed away. His neurologist, who had known us since he was 4, had called me and said George was a true angel - he had saved hundreds of children’s lives. I asked her how and she said because of our trip to the US in 2001 when I took George to America to go on the ketogenic diet. Sadly, it wasn’t available to him in the UK at that time but he did really well on the diet and on his return to the UK, his neurologist asked me to go with her to Johns Hopkins in Baltimore, to spend a week with Dr John Freeman, who revitalised the use of the diet there. We trained with him for a week and then once home, George’s neurologist started the ketogenic diet in her clinic and I supported some of the families. Due to this, we were able to help hundreds of children.
George had a knack of gifting us in his own unique way. His death left a huge hole in all of our lives. He left an imprint on everyone he met, making them look at their path in life and changing it to another more amazing one.
Teachers and carers have told me they have never met a child like George, or anyone who left such an impression on them. One of his carers now travels the world and writes George’s name in the sand everywhere he goes, sending me photos. One is now a policeman, as George’s death made him re-evaluate his own life and look at what he wanted to do and just go for it.
For me, George gave me one final gift - the gift to go to university and train to be a children’s nurse. I've worked at Great Ormond Street Hospital on the neuro ward, I now work at a children’s hospice, where I can can help children and their families with the struggles of caring for a child with complex needs and whatever else life throws at them. What a beautiful gift to pass on to me.
To infinity and beyond George.