Updated on Jun 17th 2012 at 7:57 PM from the JustGiving API

Tt

Thanks for taking the time to visit my JustGiving page.

I know that many of you know that my nineteen month old twins Darcie and Evie have not had the best start to life, at 9 months old they were diagnosed with Epilepsy and at twelve months we were given the news that they had also diagnosed Dravet Syndrome.

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of epilepsy that begins in infancy.  Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge.  Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life.  Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed.

There are only around 300 people diagnosed with the syndrome in the UK and we are the only family known to have twins that have both been given the diagnosis.

The only thing that I can offer is that of raising awareness and money for research and hopefully better treatment and medication.

So please dig deep and donate now.