Meet George
Benefiting charity: Dravet Syndrome UK
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 www.jeansforgenesday.org.
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.
At the time, doctors believed George was experiencing severe febrile seizures. 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. Over the following year, he spent around 14 weeks in hospital, with repeated admissions, several intubations, and serious respiratory problems. He eventually lost his ability to walk and now requires tube feeding and specialist care at home.
The impact on the whole family
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.
Susan also has to plan for the possibility that she may suddenly need to leave home to be with George in hospital. She has even prepared letters from the Tooth Fairy in advance, so that the other children don’t miss out on important childhood moments when she is away.
The demands of George’s care have also affected Susan and her husband Tim’s relationship. They often have to take turns being at the hospital, meaning they can go for long periods without seeing each other. They have made a conscious effort to spend time together each evening and even managed their first full day alone together in eight years.
Despite everything, Susan says George has brought incredible qualities to their family. She believes his sisters have become more empathetic, kind and accepting of differences because of their experiences with him.
Finding support and making a difference
Dravet Syndrome UK has provided invaluable support, including a seizure monitor and opportunities for the family to meet others who truly understand what they are going through. Their Family Weekend Away has become particularly important – a place where they can simply be themselves, without feeling judged or having to explain their lives.
To help ensure this vital support continues for families like George’s, Dravet Syndrome UK was awarded a £10,000 grant from Jeans for Genes to help cover its core costs. This funding helps the charity continue providing the vital support, information and services that families living with Dravet Syndrome rely on.
Above all, Susan wants people to see George for who he is, rather than focusing only on his condition. He is a loving, happy little boy who adores music, being outdoors, and making his family laugh.
Despite everything he has been through, George continues to radiate strength, happiness, and joy. As Susan says, when things are difficult, their family motto is: “I need to be a bit more George today.”
To find out more about Dravet Syndrome visit https://www.dravet.org.uk/