Dravet kills ... again!

While reflecting on our progress so far, I realised that we did not emphasise the frightening face and the severity of Dravet Syndrome, and I will now try to amend that.

To put it as simple as possible: DRAVET KILLS.

There is a thing called Sudden Unexplained Death in Epilepsy (SUDEP), which is pretty self-explanatory, it refers to those deaths that occur to epileptic patients in the absence of another obvious cause of death. The SUDEP incidence in normal epilepsy is pretty high to begin with (15-20% of the deaths in epilepsy are caused by SUDEP). Well, just to be a story topper, the SUDEP risk in patients with Dravet Syndrome is higher!

There is another thing in epilepsy called status epilepticus, which basically means a seizure lasting longer than 30 minutes. This is a medical emergency because the longer a seizure lasts, the less likely it is to stop on its own. To be even more awkward, any seizure can become status epilepticus. And, again, mighty Dravet is known for its prolonged seizures! 

What Dravet is also good at is to be resistant to anti-convulsive medicine. Which means that there is no way to keep seizures under control, and each seizure could turn into status epilepticus.

Now let's drop all this medical jargon and just imagine for a second that YOUR child is suffering from Dravet Syndrome. There are two things you know for certain:

1. there will be another seizure; there always is.
2. the next seizure can be a prolonged seizure that may or may not cause brain damage or even worse, that might not stop until the child's heart stopped beating and they stopped breathing.

Imagine having to live with those two certainities day, after day, after day. Imagine the terror you would go through if your child would start seizing. Some of the children affected with the syndrome have seizures EVERY DAY. Imagine waking up every single day wondering 'Will it stop today?' Imagine seeing your child, a tiny little human being, moving their limbs uncontrollably, and you just stare at them, seeing their suffering and knowing you cannot do anything to stop it. Just imagine all that? How did it feel?

Now you can breathe a sigh of relief, knowing that it is not you. However, this could be any one of us. Dravet strikes at random! Yes, it's a genetic mutation, but no one in my family had any type of epilepsy. The closest we came to epilepsy was when I (Carmen) had a febrile seizure as a child; 1 - that was it. So, there was no way of seeing this coming. There's no way to tell who is going to be Dravet's next victim either.

So please don't ignore us; the worst thing you can do is ignore it. Make a donation, give us a share, spread the word about this horrible, horrible disease and together we stand a better chance of finding Dravet's weak point!

There is one last thing I want to share with you today. I want to talk to you about a little girl named Clover (click here and here to see her story). Baby Clover was diagnosed with Dravet Syndrome in 2010. She has had it rough. Her first ever seizure lasted a long time and ended up with her needing to be intubated (she was only 6 months old). Since then, she had many many bad seizures. A few days ago, she had a prolonged seizure which lasted TWO HOURS. It caused intensive brain damage and left her unable to breathe on her own. Last night, Clover passed away. She would have been 4 years old this June.

Rest in Peace Clover! Our thoughts go to her family, we are very sorry for your loss!

If you want to leave her family a kind word or make a tribute for little Clover, you can do so here!

Dravet kills, it's only fair we do our best to kill Dravet.

Carmen

Carmen falls in love

This is going to be a short post, as this is a painful topic for me to talk about. My girlfriend is in love with another!

How did this most horrible event happen? I will tell you. One evening, we were browsing the internet, and whilst doing this we came across a picture of a slim, strong-bodied, athletic looking model, in a very striking pose. Carmen was instantly attracted and no longer had any interest in me whatsoever. Her heart was taken! All she could talk about for the rest of the evening and the next day was this model. She kept dreaming about going out and spending the day together with her ‘baby’ (as she kept saying) and going for a spin together in the countryside. It was like I had become invisible.
What could I do to win her back? How could I even compete? I was heartbroken.

My only consolation was her ‘baby’ was not big enough for her. Not only this, but her ‘baby’ was rather on the expensive side. So, this meant that buying it was probably out of the question (yes we are not talking about a person; I don’t know what would make you think otherwise). We are in fact, if you hadn’t already guessed, talking about a bike. Carmen fell in love with a Dawes Horizon Plus 2012 (a very good touring bike brand), and as much as this pains me to say, it does actually look rather good. See for yourself!

Dawes Horizon Plus 2012 (picture from Dawescycles.com)

So, although Carmen fell in love with another, I don’t think that I will be replaced just yet (I breathe a sigh of relief). But this could well be only short term, as we are currently searching for suitable bikes to help us undertake our challenge in August, as our current bikes would not be up to the task of carrying all our equipment. So I shall have to take each day as it comes and be extra attentive to her, to ensure I am not replaced with a different model. I hope that you all will have your fingers crossed for me.

Carmen flies a Concorde and wins an award!

I know what you’re thinking, how the hell did she do that, they don’t even fly anymore? Where did Carmen even get hold of a Concorde? And what relevance does this have with Dravet? To reveal this I will have to tell you a little story.

Last Friday (10th May), Carmen was invited to attend an event run by the Students Union of her university, something called the Made a Difference Awards. The reason she was invited was because she was, in fact, nominated for one of the awards! The award she was contending for was Chelmsford Student Rep of the Year (the campus she is based at), as voted for by the Staff at the Students Union. Naturally, Carmen was delighted to be nominated for this award and wanted to attend. Carmen was also kind enough to invite me along as well, to enjoy the celebrations (I think she secretly didn’t want to be without my hilarious wit and banter), and me being the gentleman that I am accepted the invitation to escort my lady to the awards (it didn’t have anything to do with the fact that there was a 3 course meal and wine at the awards as well).

The Made a Difference Awards were held in Duxford at the Imperial War Museum and we travelled up their by car (the real reason I was invited: as a taxi driver). There were three of us in the car, myself, Carmen and one of her friends. When we arrived and went in we were greeted with glasses of sparkling wine and appetisers (which I certainly didn’t need as my appetite was already pretty good). But the main highlight that you cannot fail to notice when walking inside is the 200 aeroplanes the building contains. You see, Duxford Imperial War Museum is set in the grounds of the WWI and WWII airfield, so is dedicated to aeroplanes. But it does not only play host to planes from the first and second world wars, but also more modern planes as well, of which the Concorde was one of them (The first part of the mystery is revealed).

Us at the awards - please note both in purple to promote Dravet

We then had to find out where we were seated, as everyone was assigned their own seats. We were on a table with 7 others, and our table was situated right underneath a fighter plane! This gave the table quite an enclosed feeling, although it also made it a bit on the dark side (not like Darth Vader). The evening was quite nice and started off with a speech from a member of the Students Union. After that had finished, the thing I had been waiting for (as I was very hungry by this point) arrived; the food! But I was a little disappointed. The starter was rather on the small size, the highlight for me being the bread rolls served with it, but luckily the other courses made up for it (see below).

Our tiny starter with two bits of ham

Main course - Chicken and Potato with veg

After the food, the presentations started. Unfortunately, on our table we were fairly near the back, so it was a bit hard to hear what was actually being said, but when it came to Carmen’s section we strained extra hard to hear. The announcer read out the nominees for Carmen’s award, and then, after a short pause announced the winners’ name. The name being ‘Carmen Neagu.’

Carmen had won the Chelmsford Student Rep of the Year award! I was so proud of her, she totally deserved it; and I’m not just saying that. She worked her socks off trying to represent all her classmates’ problems and queries associated with their course, which unfortunately were many. But she did her upmost to help them, and lobbied for them at meetings, and took issues further when they needed to be. On top of this all, she was a volunteer Student Trustee on the board of the Students Union, and was president of the volunteering society.

I don’t want to turn this into a Carmen worshipping post (although I’m sure Carmen the Modest wouldn’t mind that), but if there were more people who put themselves out like she does for other people, then the world would be a much nicer place!

Carmen receiving her trophy and framed certificate

But back to the main point of the story (I get distracted easily, just ask Carmen). As Carmen won she had to go up to the stage to be presented her trophy and a framed certificate with her accomplishment on it. After being presented with her awards, (which you can see above) Carmen was taken away by someone. When she vanished I said to Carmen’s friend, "she’s disappeared, where did she go?" We had no idea. Then about 15-20 minutes later, Carmen comes back to the table with a big smile on her face, jumping up and down like she does whenever she is really excited, and she said to us, “I’ve sat in the cockpit of the Concorde!”

On hearing this, of course I was jealous; it’s not every day something like that happens. I shall forever be in envy of this. Apparently, all winners of awards that night were taken up to the Concorde, and a pilot let them sit in the cockpit and have their photo taken, and he would tell them a bit about the Concorde (There is of course proof of this event in the picture below). The rest of the night was finished up with a disco, where I shall refrain from telling you all about my legen…(wait for it)…dary dancing skills, before then heading home at just after midnight.

Carmen in the cockpit of the Concorde

So that is how Carmen got to sit in the cockpit of a Concorde. Okay, so maybe she didn’t quite fly it, but it was the next best thing, and still not something that many people will be able to say they have done. If you have, then like Carmen, feel free to rub it in my face.

On another positive note though, whilst at the presentation awards, Carmen did a bit of mingling with some of the staff and students, and did a bit of promotion work, telling them all about our cycle ride and why we’re doing it. Due to this, a couple of people agreed to sponsor us and spread the word around, so it was a good evening all round.

Donations received so far

Because of difficulties with setting up the donating page, for a long time we were unable to receive online donations. However, in that time we have not been idle! We spread the word about our cycle ride and we even received some offline donations and some freebies!

This could not have been done without S's support (S is from ARU; we're using capitals as we do not want to give people's names if they don't want their names splattered all over the internet!). So thank you S and also thank all our very generous donors.

The first freebie we received was a bike! A what?! you ask. Yes, you heard me right; a fully functional bike. It's previous owner got a new bike and was looking for a new owner, who happened to be me. And a very proud owner I am as well. The picture below shows my proudesness and my newbie freebie bikie.

Secondly, Sustrans (go to their website by clicking on their name! they have an awfully cool website) have generously offered us all the freebies seen in the picture below, including cool waterproof (we have been assured they really are waterproof!) bike seats covers, shiny reflecting bits so we can be seen in the dark, tshirts, pens, pencils, pencil sharpeners etc.

Also, they have been very helpful and provided us with spare bike bits, such as brake pads, brake wires and a puncture repair kit! Even more, they have been very patient and answered all my questions about how to do this and that, and how do you repair this and that. And boy, did I have a lot of questions! They probably went home with a big head, thinking "Dear Lord, thank God we got away from her!!"

They have been extremely nice and helpful so I'd like to thank them a lot lot!

Thank you so much everyone who contributed so far! You've all been great :)

Carmen

Conquering Everest

 Now I know what you might be thinking. Everest is being used as a metaphor for some big challenge that we have overcome, some mighty obstacle of immense proportions, and so on and so on.  Normally having thought this you would be right, but not on this occassion! We (Carmen and I) actually did cycle up Everest and I must say, we found it rather easy!

Carmen at the peak of Everest

As you can see however, this Everest was not in the Himalayas, but in fact was the name of a road in the mighty town of Rayleigh (Carmen's words, not mine), in Essex, and not even up much of a hill.You might well think that there are no similarities, and in fact, you would be right; although you would never be able to tell that by looking at how proud Carmen was to have conquered it.

Apart from Everest, which was rather flat, Rayleigh is actually surprisingly hilly in some areas, which made for a bit of a challenge. Whilst cycling on one of the hills in Rayleigh, me being so very clever met with a bit of an accident on my bike when my shoe got caught on my front mudguard and snapped it (*dumbass*). Due to this we had to have a short stop, where due to my great foresight and planning, I had not brought any tools (*see above*), so I couldn't get the mudguard off. Instead, I had to rip it off with my hands. We eventually made it back home, where Carmen then took a picture of the aforementioned mudguard to show you all my proud achievement.

My poor mudguard :(

Before this fateful day, which was a Tuesday we had a hard weekend of training. On the Saturday (the day after our previous post) we visited the gym and did some interval training on the treadmill, which involved lots of change of both speed and incline. It was a tough session and Carmen, with her little legs did very well, although she was very surprised by just how hard it was on the legs to walk up a very steep incline!

We then followed this up by attempting to do some leg weights (Carmen's idea, not mine). The challenge was that some guy, I don't know who as I did not see them (but it must have been some sort of Arnold Schwarzenegger lookalike), had leg pressed 400kg! Carmen being Carmen said to me, "That's going to be easy." She then sits down at the machine and puts her little feet against the metal plate, takes a couple of deep breaths and pushes with all the strength she has got in her legs, her face going bright red like a tomato in the process and the plates do not move even a millimetre; if anything Carmen actually pushes herself backwards. (Here is a link to a picture of what 400kg looks like on the leg press). The morale of this story being, try and realise that 400kg is actually 8 times your own body weight! And stop being so boastful!

We followed this up on Sunday with our first offical outdoor cycle. It was the first day of good weather in Essex we have had for quite a while, so we decided to cycle to my badminton match. (For those of you who don't know, I play a lot of badminton; *and I'm sure he'll bore you all with all the badminton he's playing!*). We then had a short break whilst I played my match, winning 9-0 I must hasten to add (*see, I told you so!*). After our short break we then headed down to Southend sea front. It was extremely crowded down the seafront for the first day of sunshine, considering, I will say, it was far from being warm outside. I noticed even that most people were not even wearing many clothes, and/or shoes! It's surprising how at the slightest sign of sunshine people in this country start taking their clothes off and riding around in their cars with the roofs down!
We then continued along the seafront and rode all the way along till Shoeburyness where we stopped for a quick refuel.

Carmen on her newly acquired freebie bike!

Me refuelling in Shoebury

After this quick refuel we headed back along the seafront with the plan in our heads to cycle back home, but unfortunately we didn't quite make it as far as we wanted. Carmen was still feeling the aftereffects of lifting 8 times her own body weight the previous day on her little legs. So we decided to catch the train back from Southend to Benfleet (where we live), blocking the entrance of one of the doors in the process with both our bikes so no one could get in or out of that particular door. This ended up in total being two and a half hours of cycling since we left home, which wasn't too bad really, for a first session.
 

Carmen at Southend seafront Carmen passing out, yet again!

Just to clarify, the comments made in between **s are made by the one and only, yours truly, Carmen. *And that's why they're so incredibly funny*.   Until next time, take care!

First Official Cycling Session

Today was the day of our first official cycling session (make that yesterday now). We even put it on Facebook, so it must be official! As you can see below, we were both raring to go in our Dravet tops and wearing our padded cycling shorts, which I can safely say are not nearly as effective as we would have liked. Hence some very sore bottoms afterwards! (Carmen wouldn't let me put asses)
 

Do you like Carmen's adult nappy?

As the weather was horrible and depressing outside, we decided to head to the gym for our session today. The goal was to see how far we could cycle in an hour at about 70-100 rpm (revolutions per minute). This was to give us an idea of how much mileage we could probably do over a day of cycling. So we hopped onto the bikes and began pedalling, which we have even provided proof of.

We did get a few dodgy looks though when Carmen started flashing (the camera that is). As if no one had seen a camera before. The cycle itself was not as bad as we were expecting, although, as I said earlier, certain parts of your anatomy were a little worse for wear afterwards. We both thought we did pretty well, myself clocking up 18 miles and Carmen doing 12. However, it is unlikely we will be able to sustain that pace for a whole day, let alone a week. Especially as some of us were slightly more tired than others! (I had trouble keeping up with Carmen, as you can see)
 

I did check for a pulse to make sure she wasn't dead

 
 After I had woken Carmen up from her exercise induced coma we went home to have a well deserved dinner. To follow the trend that everyone seems to be doing online at the moment we included a picture of our delicious homemade meal (recipe available on request).

Got to love salmon!

 
Today, we plan to do another hard day of training, thats if our bodies will allow us to get out of bed in the morning.

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!