Little Moments Matter film launched for Dravet Syndrome Awareness Day

We’ve launched a special film called ‘Little Moments Matter’ to mark Dravet Syndrome Awareness Day, 23rd June 2024.

The film features three families caring for someone living with Dravet Syndrome including Laura, Alex and their son George, aged 2; Jen, Tom and their daughters Beth, aged 9 and her sister Grace, aged 4; and Kim and her son William, aged 33. They share what they love about their children, what they don't love about Dravet Syndrome and how Dravet Syndrome UK has supported them. 

Meet the stars of the film

Laura, Alex and George

George, who is now 2 years old, had his first seizure at four months and it lasted for 40 minutes. The doctors thought it was a febrile seizure and he was discharged the next day. 

Over the months that followed George went on to have many more seizures and later that year in December he had a really big seizure where he was admitted to intensive care. Following this George, Laura and Alex underwent genetic tests and by February the following year they received the diagnosis of Dravet Syndrome.

Laura says:  “I literally cried for two days when George was first diagnosed and I started learning more about the condition. I was grieving for the life I thought we would have. My first year baby bubble burst in an instant".

“We are coping well pretty well now and take things day by day but it's the unpredictability of it sometimes, a seizure can appear from absolutely nowhere". 

Kim and William 

William, who is now 33, had his first seizure at one year old. After months of having seizures, and ‘blue light’ ambulance dashes, Will was diagnosed with severe myoclonic epilepsy of infancy, at two years old. And finally, years later when he was 16, it was discovered that he has Dravet Syndrome.

As well as having seizures, Will has delayed development and is cognitively functioning at about three or four years old. He has problems with speech, mobility, sleeping, eating and drinking, all of which is part of how he is affected by Dravet Syndrome. He currently lives in a residential care setting called The Meath in Godalming, where he receives 24/7 care and 1-2-1 support.

Kim says: “Will was put on a totally wrong medication initially, which made him so much worse, and he had thirty seizures in a month. He spent so much time in hospital that it became almost normal, we got used to it. I was hoping that by now things would be different for families, but sadly there are still young people who aren’t getting a diagnosis in the early days because of a lack of awareness about Dravet". 

An early diagnosis is so important because it means getting treatment and support from the beginning and that can make a huge difference to the long term outcome.

Jen, Tom, Beth and Grace

Beth, who is now aged 9, had her first seizure at just seven weeks old in November 2015. She wasn’t unwell when the seizure occurred and the hospital did every test possible to find out the cause but at this point no clear reason could be found. Beth was discharged after a week in hospital.

Jen said: “We were told to go home and forget about it as she was a healthy baby girl. A week later it happened again…..and over the coming months she had hundreds of seizures and blue light dashes to hospital, it was such a worrying time. Luckily we have a fantastic consultant at our local hospital who quickly moved to genetic testing and in February 2016 we received the diagnosis of Dravet Syndrome.

“Beth is currently doing well but we are always aware that this could change at any moment. Day to day Beth is a happy girl with no awareness of her condition.”

Get involved

Dravet Syndrome UK is on a mission to bring hope to families living with Dravet Syndrome through support, education and research. Please share our 'Little Moments Matter' video with friends, family and wider networks to spread much needed awareness and help us reach more families in need of our support. 

Visit www.dravet.org.uk to find out more or email info@dravet.org.uk.