Updated on Jul 2nd 2012 at 4:50 PM from the JustGiving API

I would also like to say a big thankyou to JODY chapman and paul young for setting up the tents and BBQ at the halfway point and also Stuart Lupton ad Scott Colcluff for following us all the way in the support vehicle. Cheers boys

The way of the roses

170 miles in two days!

There are some amazing people who are not only dedicating their time but bodies to help Darcie, Evie and others who suffer from dravet syndrome.

I want to take the opportunity to thank them all from the bottom of our hearts, it means so much.

They are namely Richard Cresswell, Scott Reid, Michael Hamilton, Scott young, Jason hill, matthew booth, andrew Thompson, Jonathan Greening, Nick Montgomery,Andy Harrison, Darren Clutton. .

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.

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