WWW

Hello, we now have the website up and running. (Thanks Tommo!).

http://www.evansbigjourney.co.uk/

Its more of a starting point but a good one. Plenty of things to add when we get the "ok". (Which on that front - we are still working with hospital / gp to get the x-rays & mri sorted but hopefully will get an update tomorrow).

4063

...is the number of miles from Silsden to St Louis Children hospital. A (small) prize for the most original fundraising idea which incorporates this number of miles !

Behind the scenes

Hi - nothing much to report in terms of specific progress but we are liaising with the hospital about x-rays, scans, etc and, yesterday, we also took the video clips that we need to send off - with Ev doing different postures and transitions between these certain postures. We also have loads of people helping out with fundraising ideas.

Loads of things from Car Boot sales, sponsored walks, photo dvd's, Yummy Mummys calendar (think they are all a little too keen on doing this one... ) as well as ideas forming for bigger things such as auctions, raffles, charity balls, sportsman's dinners, race nights, battle of the band nights, other gigs, etc, etc (SORRY if I have missed anyone). We are also looking at getting a website up and are working on this - more on this later.

Thanks again!

Update

Had pretty good meeting with the hospital. They were happy to help us get scans and x-rays that we need, but they do want to look into it a bit further. They want to look into possible complications (and would you have to keep going back ~ and paying! ~ if there were complications) as well as what is required in terms of post-op physio back in the UK. Which is fair enough. However, we can still send all of the stuff off to the states to see if he qualifies, while they are doing this.

Probably as good as expected, we just need to make sure we keep on top of appts for the x-rays, etc.

Big Week

Big week coming up: Loads on at work (3/6 people off and the auditors are in all week...), the school intro meeting for Sam on Wed (jeez, where did those 3yrs go?), Loup going to the races on Thursday (very well deserved break) and then her birthday on Friday. Not to mention the small matter of the England game that day as well (boy, that is going to cost me to watch it ;)

However, the biggest part is that we have an appointment with Evan's consultant at CDC (Child Development Centre @ Airedale) on Thursday. We are going to discuss SDR and see how they can help get the info that we need (scans, xrays, etc). Quite nervous, because if they aren't 100% behind us, it will make it all the more difficult. Hopefully, they will be as positive and helpful as they have with everything else to date...

PS ~ Thanks to everyone who has been suggesting fundraising ideas. It really is great to know that people are so willing to help. Keep thinking, as when we get the ok it will then be all hands on deck (or should that be hands in pockets...)

Reply from St Louis - another step to take!

...well, they have asked us to fill the next forms in and provide a video. Which is good - hopefully get that sort this week !

Fingers crossed

Sent off the online patient enquiry form to St Louis hospital yesterday. They take a look and, if there are no showstoppers, they ask for more info.

Raffle tickets

Still a little while from getting the ok to proceed, but been thinking about fundraising, for when we do. Apparently, if you want to do a public raffle you have to get the local authority involved to get a licence.

Does anyone have any experience with this ?

Thanks in advance

What's next ?

(I was going to title this post "next steps" but then thought better of it...although you do need to keep a sense of humour...) Anyway, we have an appointment with Evan's consultant week after next - hope to have their view on it then. Will post an update after that.

There is also a great Facebook page (http://www.facebook.com/#!/group.php?gid=161839724125&ref=ts) and one of the guys from St Louis has even been in touch with us.

Finally, its not just about Evan. There are hundreds, if not thousands of kids in the UK who would benefit, and we would like you to help us get this on the agenda. If you have a minute, please visit (and keep an eye on) http://petitions.number10.gov.uk/Parents-4-SDR/ it's currently on hold while Cameron asks Clegg what to do (oops, little bit of politics...) but hopefully it will be back on shortly.

Finally, i'd just like to say thanks to the loads of people already thinking about fundraising. Once we get the go-ahead it will be all systems go. (there is even mention of a "yummy mummys" calendar....YOU HAVE BEEN WARNED!)

St Louis

http://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htm

The beginning...

Hello.

As i'm sure some of you might be aware, we are investigating SDR (selective dorsal rhizotomy) - which in short is an op which will help Evan. I'll post more details later. Trouble is (1) it's not currently available in the uk (2) not everyone is able to benefit from this (3) its v.v.expensive and (4) you have to spend a month in the US.

Easy, eh !?

So I thought I would put this together as a repository for the various pieces of info that we start to collect and for his family, friends, fans and followers to keep in touch. More importantly (related to point 3 above) we are going to need a lot of help and support raising the approx £40k which is needed. That said, for those who have met Ev, I would hope you agree he is worth every penny (should that be cent?).

If anyone has any fund raising ideas, or has a Van Gogh up in the attic that they are fed up with - we will be in touch !

Thanks for listening. More later...