Last year a colleagues daughter was diagnosed with Dravet Syndrome. This is a life long condition that requires constant care and results in her having up to 200 seizures a day, spending much of her time in the hospital. A team of us at work are doing a charity cycle from our office to Great Yarmouth, a little over 100 miles. 

Any donations would be appreciated and go straight to the Dravet Syndrome UK charity who help children with this condition through education, medical research and support. 

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.