Our fight to raise awareness of the devastating condition that has taken over our daughter’s life
FAMILY EAGER TO MAKE SURE OTHERS ‘DON’T FEEL SO ALONE’
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, Dravet Syndrome.
Scarlett was finally diagnosed when she was 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.
Because three of those took place between December 2015 and New Year’s Day, the family 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 agreed to do the required blood tests and, almost 10 months later, the diagnosis was 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 helping charity Dravet Syndrome UK to spread the word and raise funds by sharing their stories in June, – Dravet Syndrome Awareness Month. Although officially a “rare” condition, occurring in only around one in every 15,000 live births, Dravet Syndrome is one of the most common genetic epilepsies, and one of the most treatment resistant.
In around 85 percent of cases, it is caused by a mutation in a gene called SCN1A. It’s not uncommon for sufferers to have multiple seizures in some cases hundreds, day and night.
There is also a much higher risk of sudden unexpected death compared to other forms of epilepsy. Epilepsy is just one part of the condition, however.
Dravet Syndrome also causes learning disability and a spectrum of associated conditions, potentially including autism, ADHD, challenging behaviour and difficulties with speech, mobility, feeding and sleep.
Because sufferers have such complex medical needs, often requiring emergency care, lack of awareness can make living with the condition even more challenging.
For example, some common epilepsy medications, known as sodium channel blockers, can make the seizures worse. By raising awareness, Dravet Syndrome UK hopes more people can receive an earlier diagnosis and get treatment. The charity also wants to increase understanding about the significant impact it has on families, as they often struggle to get enough help. In 2022, Scarlett had a vagus nerve stimulator (VNS) implanted and it transformed her quality of life. The device sends a small electric shock to the brain which can stop a seizure before it happens.
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.”
As the only UK charity dedicated to supporting those with Dravet Syndrome, Dravet Syndrome UK provides emotional, practical and financial support for more than 550 families.
The charity also provides education and information for professionals and funds research. 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 the organisation. With the support of her family and friends, she has raised over £1,600.
Galia Wilson, chair and trustee of the charity, 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 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 dravet.org.uk or email the charity at info@dravet. org.uk.
The first years were definitely hell. We didn’t leave Nottingham for three years
Catherine Cooper, mother