Jacob's Peterborough to Great Yarmouth Charity Bike Ride page

Jacob Lloyd is raising money for Dravet Syndrome UK
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Peterborough to Great Yarmouth Charity Bike Ride · 13 September 2019

Dravet Syndrome UK is dedicated to improving the lives of children and adults living with Dravet Syndrome through medical research, education and awareness and appropriate support.

Story

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. 

Last year a work friend received the news that their daughter was born with this genetic disorder. 

A group of 19 will be cycling from Peterborough to the site office of a work project in Great Yarmouth (111 miles) to raise money and awareness for Dravet Syndrome UK.

Please donate to this very worthwhile cause! 

Donation summary

Total
£350.00
+ £77.50 Gift Aid
Online
£350.00
Offline
£0.00

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