As a team building/charity event, Helen and I are organising a charity bike ride from our office to Great Yarmouth with members of the Great Yarmouth project team (EA, T&T, BAM etc).  The bike ride would be approximately 100 miles long and we would also like to take this opportunity to raise some money for charity.  

This last year has been completely and utterly life changing for me and my family and I would really like to take this opportunity to raise some money to help others in the future that may find themselves in our
situation.  If you weren’t aware, for the last year, my daughter Emily has been suffering from epilepsy which has been progressively getting worse for her.  she has over 200 seizures a day and we have called ambulances and been in hospital with her on average every 2 weeks for the last year, with her being put in an induced coma and intubated as rescue medications are not effective for her.  We had a diagnosis late last year that she has a genetic disorder called Dravet syndrome. 

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. 

I would be truly grateful for any donation that you would be willing to give to support this cause.

Thankyou