Little Moments Matter: a new film from Dravet Syndrome UK marks Dravet Syndrome Awareness Day
A new short film called‘Little Moments Matter’has been launched by Dravet Syndrome UK 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, star in the film and share what they love about their children, what they don’t love about Dravet Syndrome and how Dravet Syndrome UK has supported them.
Dravet Syndrome is a devastating and life-limiting epilepsy that affects one in every 15,000 people in the UK. As well as severe, prolonged seizures, those living with Dravet Syndrome are affected by a range of comorbidities, for example intellectual disability, autism, ADHD and problems with sleep, mobility and language.
Because children and adults living with Dravet Syndrome have such complex medical needs, often requiring emergency care, lack of awareness can make living with this devastating condition even more challenging for families. For example, some commonly used epilepsy medications, known as sodium channel blockers, can make seizures worse for those with Dravet Syndrome.
Kim, William’s Mum said: “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 Syndrome”.
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.
Dravet Syndrome UK is on a mission to bring hope to families living with Dravet Syndrome through support, education and research. Please share their‘Little Moments Matter’video with friends, family and wider networks to spread much-needed awareness and help DSUK reach more families in need of their support.
Visitwww.dravet.org.ukto find out more or emailinfo@dravet.org.uk.
