08/09/2026
George’s siblings are helping to raise awareness of children’s genetic conditions through the annual Jeans for Genes charity week.
This year, the Jeans for Genes Day campaign week runs from Monday 14th to Sunday 20th September and invites everyone to wear their jeans to work or school in return for a donation
George was born prematurely and had chronic breathing problems from birth, meaning he spent a lot of time in hospital. At around 11 months old, he had his first major seizure. His temperature reached 41°C and, after suffering from another seizure, he was taken to intensive care, where he remained for ten days. His family was told to prepare to say goodbye.
He continued to have seizures and frequent hospital admissions before he was finally diagnosed with Dravet Syndrome, caused by an SCN1A mutation, just after his third birthday.
The diagnosis came during the first COVID-19 lockdown, leaving his family feeling shocked and completely alone.
As well as seizures, George is autistic, non-verbal and has developmental delay. He has significant sleep difficulties and, more recently, his condition has deteriorated considerably. At one point he was having around 75 seizures a day, leading to status epilepticus and another intensive care admission.
Dravet Syndrome has had an enormous impact on George’s whole family. During the first two years of his life, they were only out of hospital for five months. His mum, Susan, spent so much time caring for George in hospital that she missed much of her eldest daughter Evelyn’s early life.
George’s sisters, Evelyn and Lillian, have grown up around hospital stays, seizures and uncertainty. Both receive counselling and support through school, and Susan makes sure they are prepared when George has an operation or becomes seriously unwell. Despite the challenges, they have a very special bond with their brother. They sit with him when he is poorly, play with him, and sing together.
Their youngest brother, Billy, is still too young to fully understand what is happening, but he adores George and seeks him out.
Visit Bio to view the full video and read more about George.
Or go to jeansforgenes.org/george