I am taking part in the Great South Run on behalf of our close friend’s twins Darcie and Evie.

Age only 19 months, the twins suffer with a devastating genetic condition known as Dravet Syndrome. Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), it’s 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.  The condition delays learning development, causes communication difficulties ataxia and autism.

At present there are approximately 300 people within the UK diagnosed with Dravets Syndrome, Darcie and Evie are the only known set of twins diagnosed.

Both Darcie and Evie are given medication five times a day and at any given time either or both could pass away during the seizures or of an explained death associated with the syndrome.

It is hard to put into words what our friends are going through and we all need to be there to support them hence my keenness to run the Great South Run later this year.

I would appreciate your support to raise money for research into this disease and hopefully better treatment and medication for these beautiful girls.