Who are we and why are we here?

Us in our Dravet tops

 

My name is Ben and her name is Carmen. We are a young couple brought together from the opposite sides of Europe; myself from Essex, England and her from Bucharest, Romania. How did this occur, I hear you ask? Well that is a long story and not really of importance now, but suffice to say that we are very grateful for the internet and an amazing week in London three and a half years ago. Since then we have spent the vast majority of time together either in England or Romania clocking up quite a few air miles between us. After being together for about nine months this little one was born on the 1^st September 2010. 

 

 

It didn't take us very long did it?

But no, unfortunately, she is not ours. Disclaimer: We do not want to have kids quite yet (Carmen will breathe a sigh of relief at that), but look at her, she is just so darn cute! Her name is Sânziana and she is Carmen’s youngest niece. 

Sadly, when she was 7 months old, in April 2011 she had her first seizure and was later diagnosed with Dravet Syndrome, a rare and devastating form of epilepsy that begins in infancy. Only 1 in around 20,000 children have it and she was unfortunate enough to be one of them. I remember her being such a happy little baby and looking so very small compared to her older sister, Lara, when I saw them together. She still remains that way even now, smiling nearly all the time and always looking happy to see you and reaching out her little hands to get your attention. Although she's not so small in comparison with Lara anymore! (see for yourselves below)

Lara and Sanzi 2010

Lara and Sanzi 2013

 

Due to her syndrome her parents (Carmen’s brother and his wife) helped set up a charity for Dravet Syndrome (which you can see here if you can read Romanian). We wanted to join this fight and help out.

So how can we fight against Dravet, a syndrome with no cure and very limited treatment options? The treatments success (if it can be called that) varies quite a lot from case to case and at best only helps control the seizures.

This is when Carmen came up with a brilliant idea! She thought to herself I want to do something to raise money and awareness of Dravet. Something that will attract people and get them interested in our story. She didn’t want to just do another marathon, she wanted us to do something different, something not many people had done before. So she came up with the idea of a bike ride. Not just a one day ride from London to Brighton or even a few days ride from London to Paris, but a massive trek across England! She decided to travel from mainland England’s easternmost point, Ness Point, Lowestoft in Suffolk (52°28.87’N 1°45.77’E for you navigation experts) to mainland England’s westernmost point, Dr. Syntax’s Head, Lands End in Cornwall (50°04’N 5°43’W). A ride that will take us about 550miles across England; through cities, towns, national parks and even the capital itself.

A rough map of our planned route

I imagine some of the thoughts running through your heads now might be, are these two people mad? Couldn’t they raise money in a way that was much less effort? The answer to these questions being a resounding yes (especially to the first one). But we wanted to challenge ourselves, and make ourselves really have to work for it, and properly earn our sponsorship. Not only did we want the challenge, but we also wanted to do something that would stand out, grab people’s attention more, and have a bigger impact. 

So that’s what we decided and this blog is going to follow our journey throughout this experience, beginning with our training and preparation, leading right up to the 17th August 2013, when we shall get on our bikes and begin our journey. We shall keep you updated as we go along; so follow us here and wish us luck!