Last year a friend and colleague's daughter was diagnosed with a genetic disorder called Dravet syndrome. This results in her having 200 epileptic seizures a day and she spends a lot of time in hospital, often in induced comas. Emily is under 2 year's old. 

Dravet is a life-long condition, and Emily needs constant care. Dravet Syndrome UK help support them, and many families in their position and this is a great opportunity to give back to them. 

Dravet syndrome is a very rare and severely disabling type of epilepsy that presents in infancy, sometimes called a catastrophic epilepsy. It begins in the first year of life, with frequent and prolonged seizures. It affects approximately 1 in 19,000 people and the seizures continue to be very difficult to control throughout childhood. Learning difficulties are very common and can range from mild to very severe, they usually persist and rarely improve. As the condition progresses most children become more unsteady (ataxic) on their feet. Children with Dravet syndrome will need to be cared for throughout their lives. On top of this, current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections.

A team of us, significantly made up of the Great Yarmouth project team, across its many partners,  have risen to this challenge to raise for such a worthy cause. Please donate to make our efforts and pain all the more worthwhile. Your donation can make a massive difference to families effected by this syndrome. 

Please visit the teams page (link further down the page) to see how our fundraising is getting on! 

Thank you!