Family of Leighton Buzzard boy who spent ten days in intensive care as a baby support Jeans for Genes campaign
A Leighton Buzzard family have helped to raise awareness of the Jeans for Genes campaign after their son was diagnosed with a rare condition.
George, who was born prematurely and experienced chronic breathing problems from birth, which led to him spending ten days in intensive care before his first birthday, was later diagnosed with Dravet Syndrome.
The charity Dravet Syndrome UK describes it as “a rare, lifelong and life-limiting neurological condition that includes seizures, intellectual disability and a range of associated health conditions known as comorbidities.”
At one point George was having around 75 seizures every day, leading to status epilepticus and another intensive care admission.
Over the following year he spent 14 weeks in hospital, and eventually lost his ability to walk, and now requires tube feeding and specialist care at home.
During the first two years of his life his family were only out of hospital for five months, and George’s mum Susan believes his condition has helped his sisters Evelyn and Lillian become more empathetic and kind.
“Despite the challenges, they have a very special bond with their brother,” Susan said. “They sit with him when he is poorly, play with him, and sing together.
“I want 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.”
Dravet Syndrome UK has proved invaluable to the family by providing a seizure monitor and opportunities to meet others going through similar experiences, particularly through the Family Weekend Away scheme.
The Jeans for Genes Day campaign runs from September 14 to 20 and invites people to wear their jeans to work or school in return for a donation.
Money raised from the campaign allows Jeans for Genes and its parent charity CGD Society to provide grants to charities like Dravet Syndrome UK, which supports their work with children who are diagnosed with genetic disorders and their families.
This year’s Jeans for Genes T-shirt, which is now available to promote the awareness week, has been designed by winner of The Traitors Stephen Libby and his partner Daniel Quirke.
Stephen said: "I've always used clothes to say something about who I am, so designing this T-shirt meant a lot to me.
"Daniel and I wanted something stylish people would actually want to wear, not just on a fundraising day but any day.
"The DNA running through the denim is the whole point. It is a reminder of the children and families this campaign is here for."