Surbiton family back UK wide campaign for greater awareness of rare condition which affects their daughter
A Surbiton couple, whose 9 year-old daughter has Dravet Syndrome, a rare, life-limiting, form of epilepsy, are backing a UK-wide campaign to raise awareness of the condition to help improve diagnosis and care. Jennifer and Tom Allen are among those helping charity Dravet Syndrome UK to spread the word and raise vital funds by sharing their stories during June which is Dravet Syndrome Awareness Month.
Although officially a ‘rare’ condition, occurring in around 1 in every 15,000 live births, Dravet Syndrome is one of the most common genetic epilepsies, as well as one of the most treatment resistant. In around 85% of cases, it is caused by a mutation in a gene known as SCN1A.
It's not uncommon for individuals to have multiple seizures day and night, in some cases hundreds. The risk of Sudden Unexpected Death in Epilepsy (SUDEP) in Dravet Syndrome is up to 15 times higher than in other epilepsies that start in childhood and almost 1 in 5 children don’t make it into adulthood.
Epilepsy is just one part of the condition. As well as seizures, Dravet Syndrome causes learning disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep.
Jennifer and Tom’s daughter, Beth had her first seizure at just seven weeks old and was diagnosed with Dravet Syndrome four months later. The family have endured countless ‘blue light’ dashes to hospital. As well as having seizures, Beth has a developmental delay, autism, is non-verbal. She has reduced mobility and uses a wheelchair, all of which are part of how she is affected by Dravet Syndrome.
Jennifer says: “For the first year of Beth’s life, I slept in hospital more than my own bed. The frequency of her seizures was huge, and they often lasted over an hour, they are horrific, very traumatic to see. I felt like I’d lost her so many times, she has been intubated twice.
I wasn’t leaving the house, I was terrified because I’d just be undressing my baby, and she’d have a seizure. A while ago, over a period of ten days, I was in ambulances with Beth being blue lighted to hospital four times.”
While the frequency of Beth’s seizures has reduced since the early days, the family faces many other challenges that come with the complex condition.
“I have a four year old as well, but I still can’t be alone with both of my children at the same time. It’s helicopter parenting with Beth, you have to be behind her all the time, you can’t leave her for a second as she has no awareness of dangers. So, it’s incredibly difficult. Just being constantly on high alert is absolutely exhausting. There needs to be greater access to support for families.”
By raising awareness of the condition, Dravet Syndrome UK hopes more people can receive an earlier diagnosis and get timely access to the treatments, therapies and support they so desperately need. The charity also wants to increase understanding about the huge impact that Dravet Syndrome has on the lives of families, as they often struggle to get enough help.
New research released earlier this month by the University of Glasgow in partnership with Dravet Syndrome UK, revealed the severe psychological impact on parents caring for a child or adult with the condition.
The Allen family are among those helped by Dravet Syndrome UK. As the only UK charity dedicated to supporting those with Dravet Syndrome, they provide emotional, practical, and financial support for almost 600families with the condition. The charity provides education and information for professionals and also funds research into the condition, bringing hope for the future.
Galia Wilson, Chair and Trustee, Dravet Syndrome UK, says: “Galia Wilson, Chair of Trustees for Dravet Syndrome UK, says: “Dravet Syndrome is a devastating, life-long and life-changing condition that affects the emotional well-being of all the family, but all too often this is overlooked. Someone with Dravet Syndrome needs 24/7 care for life. Severe and life-threatening seizures mean parents must constantly be on alert, while the developmental, behavioural and mobility aspects of the condition require constant support and care.
“By empowering parents like Jennifer and Tom to share their experiences, Dravet Syndrome UK hopes to bridge the gaps in understanding and help drive meaningful change.”
To find out more about Dravet Syndrome or to support families living with the condition by making a donation to Dravet Syndrome UK, please visit www.dravet.org.uk or email the charity at: [email protected]