'We didn't leave Nottingham for years - our daughter's condition meant we didn't dare'

Scarlett on a hospital bed
-Credit: (Image: Dravet Syndrome UK)

A Nottingham couple, whose nine-year-old daughter has a rare, life-limiting form of epilepsy want to raise awareness of the condition so that other people "don't feel so alone". Catherine and Matt Cooper's daughter Scarlett had her first seizure at four months old.

As well as seizures, Scarlett, from Arnold, has problems with mobility and uses a wheelchair. She has global development delay and struggles to gain weight, all of which is part of how she is affected by her condition, called Dravet Syndrome.

Scarlett was finally diagnosed aged three by which point her frequent seizures were lasting up to three hours. She endured dozens of ‘blue light’ ambulance dashes to hospital and five stays in intensive care in just 15 months.

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Because three of those took place between December 2015 through to New Year's Day, the family says they were left with trauma "every Christmas after that". Catherine says: "It was in this period that we had come across Dravet Syndrome through doing our own research, it had never even been mentioned to us."

Scarlett's neurologist then agreed to do the required blood tests, and almost 10 months later, the family had the diagnosis confirmed. Catherine added: "Even before the tests came back, we knew what it was going to be.

"The first years were definitely hell. We didn’t leave Nottingham for three years. We wouldn’t dare leave the hospital and staff who knew her.

"We were admitted so often to the ward or to A&E, that even the nurses’ faces would drop when we were back again two weeks later. We just became medical parents and nothing else for a long time."

Catherine and Matt 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 one 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.

The Cooper family pictured: mum Catherine on the left, Scarlett at the front, Nellie held by mum, and dad Matt on the right
The family of four can now lead "a bit more of a normal family life" -Credit:Dravet Syndrome UK

In around 85 per cent 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.

There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies. Epilepsy is just one part of the condition, however.

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. Because child and adults 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. 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 need "desperately".

The charity also wants to increase understanding about the significant impact that Dravet Syndrome has on the lives of families, as they often struggle to get enough help. In 2022, Scarlett had a Vagus Nerve Stimulator (VNS) implanted, which her mum says, has transformed her quality of life.

In vagus nerve stimulation, a device is surgically implanted into the chest, like a pacemaker. The device sends a small electric shock to the brain which can stop a seizure before it happens.

Because Dravet Syndrome is a spectrum disorder, not everyone responds in the same way to treatments. Thankfully, VNS therapy has worked well for Scarlett.

Catherine said: "The VNS surgery has been life changing for our family. It doesn’t prevent Scarlett having seizures, but for the first time in nine years, we have some control back as when she begins having a seizure we can stop it.

"It has meant that we have been able to have a bit more of a normal family life and do things that many people take for granted, such as going for a dog walk or to the local park with Scarlett and her little sister Nellie. We always plan our trips to the nearest hospital, but we are getting braver.

“Every opportunity I get, I tell people about Dravet and how it affects Scarlett. Spreading awareness helps people not feel so alone."

The Cooper 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 more than 550 families with the condition.

The charity provides education and information for professionals and also funds research into the condition, bringing hope for the future. As well as being on a mission to raise awareness of the condition, Catherine has been taking part in an epic challenge to walk and run 5km every day in May, raising vital funds for Dravet Syndrome UK.

With the support of her family and friends, she has raised over £1,600 for the charity. Galia Wilson, Chair and Trustee, Dravet Syndrome UK, said: "Dravet Syndrome is a rare and devastating condition which has a huge impact on those affected.

"We are joining with families across the UK to raise awareness and share little moments of what it's like to care for someone with Dravet Syndrome so we can reach even more people in need of our vital support." Early signs of Dravet Syndrome include prolonged seizures (often triggered by fever) in early infancy.

Parents who suspect their child might have Dravet Syndrome, can ask their GP, paediatrician, or epilepsy consultant for a genetic test. 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 info@dravet.org.uk.