Brighton couple support campaign for greater awareness of Dravet syndrome

A COUPLE whose seven-year-old daughter has a rare and deadly form of epilepsy are backing a UK-wide awareness campaign

Martin and Gemma Stocker from Brighton are among those helping the Dravet Syndrome UK charity spread the word by sharing their stories during June, Dravet Syndrome Awareness Month.

For those with the condition, it is 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.

Martin and Gemma’s daughter Paige was diagnosed just before her first birthday after months of seizures and blue-light ambulance rides in hospital.

In addition to the seizures, Paige’s speech and language are also severely affected by Dravet syndrome.

Gemma said: “Paige had her first seizure when she was nine months old. It was absolutely awful and lasted four and a half hours.

“At the time, it was attributed to his temperature and poor health. But she had other seizures afterwards, each lasting a very long time.

“Her consultant immediately recognized that it could be Dravet syndrome and offered to have her tested.

“We were lucky because she was then able to get the right medication and we were able to get support in place from the start. We are aware that families are often not diagnosed until later.

“Our lives completely changed when Paige was diagnosed. She needs 24/7 care. But we’re managing. It helps that we have very supportive families.

The Argus: Paige and Martin Stocker with snooker champ Jimmy RobertsonPaige and Martin Stocker with snooker champion Jimmy Robertson

The Stocker family are among those helped by Dravet Syndrome UK.

The charity provides emotional, practical and financial support to more than 550 families with the disease.

Although officially a “rare” condition, occurring in approximately one in 15,000 live births, Dravet syndrome is one of the most common genetic epilepsies, as well as one of the most resistant to treatment.

Because children 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 difficult for families.

Galia Wilson, Chair and Trustee of Dravet Syndrome UK, said: “Scientific understanding of Dravet Syndrome has improved dramatically over the past decade.

“The availability of genetic testing has helped increase diagnosis and there are now newer and more effective treatments available, such as fenfluramine, which was recently recommended by NICE.

“But broader awareness is needed to draw attention to these advances if they are to bring real benefit to as many patients and their families as possible.

“We are grateful to all the families who share their stories during Dravet Syndrome Awareness Month.

“We hope that by bringing this devastating condition to light, more families can get the early diagnosis and life-saving support they need.”

To find out more about Dravet Syndrome go to www.dravet.org.uk or email the charity at [email protected]

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