Thursday, 30 December 2010

1, 2, 3,... panic!

For a few weeks, our mantra has been "four weeks after Christmas day", repeated seemingly every time we talked to anyone. Well, the big fella has been and we have had a bit of "quality family time" (in amongst the various coughs, sniffles and general feeling crappy) and had the obligatory trip to the Next sale to get some supplies for the trip. Un/fortunately they were out of shell-suits so I need to reconsider my travel clothes arrangements. Me and Loup even managed what could be our last "date" for some time (thanks to the baby-sitters).... So, Christmas is pretty much done and now we look at the calendar and it's three weeks and two days. Think this is where we engage panic mode. So many things to finish off. Flight details, money arrangements, taxis and transfers, borrowing suitcases, confirm hotel, etc, etc, etc. All of this is, of course, distracting us (thankfully?) from the actual reason why we are going there and what is going to happen. We will get to that particular bridge when we come to it. Evan is coping brilliantly with everything and almost seems to be looking forward to it (mainly because of the seafood restaurant that he has decided we are going to for the big bucket of shrimps).

Anyway, must go - got some panicking to do....

Sunday, 19 December 2010

What's in store?

Now that we have "got there" (in one sense) people are starting to ask questions about what will happen when we actually do "get there" (in the truer sense). The honest answer is that we don't totally know. We know the times of the flights, where we are staying, when we have to go to the hospital. We also know enough about the operation and the recover afterwards - but the reality will need to be filled in when we get there. How cold will it actually be, how much of a pain will the various transfers be, what will the breakfast be like, can we find a video-game store (most, most, important), what about the jet-lag, how will Evan react when we get to the hospital, and how will we react, and a million more questions that pose themselves at 3am. However, the following might be useful if you are interested. Get Mitchell to America . It's really close to what we will be going through - staying in the same hotel, same op, same hospital, same doctor and perhaps many of the same problems. It may well give you loads of info - it has for me!

Wednesday, 15 December 2010

Flippin'eck it's Christmas next week...

...yet still we have our minds on other things. Dont worry, we are just about done helping Santa getting everything in order but the days are going far too quickly.... 38 days until we go with only 17 work days left before then !

We met up with Ben ( and his family at the weekend. They go on New Years Day and the parallels between Ben and Evan is amazing. Hope everything goes ok for them, and we look forward to meeting up in St Louis.

As you do at this time of year, we went to Evan and Sam's school for Sam's Nativity performance on Monday  (He was 3rd Star from the right, in case you were wondering). Evan was playing out on his frame, which is something I rarely see - even at home, mainly because there isnt enough room in the house, there isnt time, the weather isnt great, he's too tired, etc... He normally gets chance to play out at school but understandably hasnt had chance with the snow on the ground. It really does affect his mobility if he doesnt get this exercise and it was a bit upsetting to see how bad his "walking" really gets after a while. His legs seem so small and so weak. He gets around fine, and of course he was happy - playing with Alex - but is really up on his toes and you can see how bad he gets. Even if, in the short term, the impact is that he can just get flat-footed it will honestly be worth it all. However, knowing Ev, im sure he wont stop there...

Thursday, 9 December 2010

Time flies by

Conscious that haven't provided an update recently, but been trying to put EBJ ever so slightly to one side (as if that was possible) so we can ensure Santa arrives, fully laden - well, laden. However, as ever, the last couple of weeks have been barmy (as in "very busy" rather than "very warm weather".....)

There was the Christmas Market and "Evan's Big Switch On" as well as front pages on both Keighley News ( and then Craven Herald ( Must admit, it was a very strange experience being in Sainsburys a couple of weeks ago. At the end of each aisle they have a news-stand which has 2 copies of the K.News on display, That's about 20 aisles! Is that how Cheryl Cole feels when Heat comes out ? erm, probably not quite.

Of course, there have been a couple of last events this year and money from previous events still rolls in, and we are also thinking about the gig/party which we really hope every one who is associated with "Team Evan" can come along, but the best bit recently has been delivering Christmas to the winner of "Win Christmas". I think "gobsmacked" sums it up pretty well...

We do, of course, have an eye on the trip and need to arrange the actual payment to the hospital as well as tweaking the schedule, sorting insurance, taxis, cash while we are out there, and this evening trying to work out the impact of jet-lag on the kids on their return. However, one step at a time.....

Tuesday, 30 November 2010


Tomorrow marks the end in another chapter of "Evan's Big Journey". The "Win Christmas" raffle, which will hopefully live up to it's billing and really provide a great Christmas for someone. The idea for this came back in July - we were starting to get so many "Bits&Bobs" being donated that we didn't know what to do with them. You can only really have so many raffles, so I just thought about having one massive big raffle with loads of stuff in it. (Partly inspired by the one on "The Gadget Show" each week). Get everyone to just buy one ticket, but make it worth paying a fiver for. The conditions of our raffle license mean that we can only raise £20k per draw, so that was the target. However, a good idea seemed to be to set it around a theme so, from somewhere, the idea of "WIN CHRISTMAS" popped into my head. BTW ~ contrary to what this might indicate - I am not in Marketing (no offence...).

The next step was to start "blagging" the stuff - and we had a decent start, with benefactors starting to offer items. However, we had one of the biggest, and earliest pieces of good fortune, when someone offered to buy everything we needed. This has the effect of turning the draw from a "hotch-potch" (still worth winning) to a bigger, better, prize. It also saved us so much time in sourcing the prize. The centre-piece of which is £750 of vouchers. Enough in itself to pretty much pay for Christmas... However, the execs at work have also dug deep in their collective cupboards / wine cellars and thrown in the booze (lots of it!!), a good friend is doing the turkey, another friend threw in another £50 of vouchers, another got panto tickets and Santa train ride tickets, and so it went on. Too much to mention really (full list on the website, but tickets no longer available... ). Massive, massive thanks to EVERYONE who offered something.

We took delivery of the tickets around early September and people started to sell them (thanks to everyone) but special thanks to Jo who has coordinated everything, behind the scenes and was doing Christmas shopping in October for it. Without this, and without the sellers (and the buyers, of course) it wouldn't have been a success. Which it has been, a massive success! We havent made as much as our original target, but it says so much about the whole fundraising effort that I occasionally find myself saying it has "only" made half of that target. It's actually unbelievable when we think about it - back in July, I was discussing it with my brother when we were planning it in its early stages and we reckoned "a couple of grand" would be a good result.

Anyway, back to the draw tomorrow. Fingers crossed everyone. Obviously, only one person can win it - and we hope it makes someone's Christmas in the same way that it has already made ours!

Merry Christmas ! (even if you don't win...)

Monday, 15 November 2010

68 days....

Been a hectic few weeks, even though we thought things were due to slow down. Just this weekend we have attended the Motown night @ Skipton Rugby club, RideoffroadUK end of season "do", and been to see "The Sewer Rats". We have also been trying to sort out the last stages of the Christmas raffle, as well as taking delivery of the Christmas cards (both still available...).

We were also chuffed to see the ball photos. Great job by Paul - take a look at if you want to rekindle memories of the night or even see what you missed.

It still keeps coming as well. Dynamo Joe's Ceilidh takes place on Friday - if you are interested, tickets are still available. Then we plan to say hello to some kind/mad souls who are running the Abbey Dash @ Leeds at the weekend. The weekend after (Sunday 28th) is Silsden's Christmas Market. The Yummy Mummies will be reprising their role of Coffee Morning hostesses, but the highlight for us is that the Gala Committee have so kindly asked Evan to switch on the Christmas tree lights. 4:30pm on the day. It kind of sums up how things have snowballed and that the whole community is really behind Evan's Big Journey. Bit overwhelming at times....

On a personal front, we have started to think about Christmas - and will hopefully get chance to find everything we need on Saturday when we take a well earned (well, I think so...) half day off and nip to Meadowhall. 

Oh yes, then we need to plan a trip to America....

We have made "Facebook friends" with a lot of other families who are also going through the same process and, as we get closer to the trip, every update that shows what they are thinking about or have been through has special resonance with us. Certainly makes it feel much more real, and i'll admit a little scary. 

Well, that's all for now. Thanks again to everyone who has helped at any level, with any event, made a donation, or just generally helped us feel less stressed. 

Monday, 8 November 2010

Not quite the Crucible...!

I did contemplate calling this blog "Snooker loopy" or "A load of balls" but that just seemed too obvious...

Well, another big event over and done with ~ 24 hour snooker marathon. The "planning" on this one started back in August, just after we had started fundraising. I was on a race trip from the Sunnybank and a few of us debated ideas and im not sure who suggested it (suspect it was either "John Smith", "Arthur Guinness" or perhaps "Snr San Miguel"...) but we decided to play snooker for 24 hours - and get sponsored to do so. Easy ?! Well, it seemed it at the time. Over the next few weeks we refined the plan and with the help of the club we incorporated it into a couple of nights fundraising activity as well. My aim was to raise enough money to make it really worth doing, especially as people were giving up their weekends and had £2,000 in the back of my mind.

Before we knew it, it was upon us and, armed with just a collection of energy drinks, a change of shirts, toothbrushes and a few  newspapers to keep us going, we broke off. The first few hours just seemed like an ordinary night down at the club. In the background the members night was going on with the dual treats of pie&peas and Trevor Craig - that bloke off of tv's x-factor (apparently).

As it got towards, and then past midnight the numbers dwindled - although  we did have some peple join us even then. Not sure if it was that they really wanted to wish us well, or that there was a promise of getting a pint. Hopefully both? However, it was soon left to myself, Tony, Greg, Daz, Ol, Dan, Leon and Jimmy to keep going.

I'll admit that we did all pinch a cat-nap here and there in between frames in the early hours but before we knew it, it was morning and we started getting visitors (my dad, Mrs Tony, my boss & Mrs Boss, and the cleaners) and before we knew it, it was morning and we were half way through. It felt like we had done the hardest bit. (Although some would argue the hardest bit was trying to eat the curry we had delivered - final word on that topic...!)

Evan, along with Maya, Sam and Loup all arrived for a photshoot around 10ish and that perked us all up. After that we had quite a lot of visitors which really helped speed things along and it was really nice to see some friendly faces (again, maybe attracted more by the bar as much as the chance to sit and watch 8 half-asleep, unshaved, increasingly wiffy blokes trying to play snooker).

The final push. A quick freshen up, a final cat-nap, an energy drink and even a tidy up of our temporary living quarters, and it was 7pm. Saturday night started and we were into the last few frames. People started to pop in, they seemed equally amazed and impressed that we were still there and still going.

By 8:40 we had played 53 frames of snooker and had scored over 5,000 points - and it seemed fitting that we should all cross the line together. So we played one final 54th game ~ 4v4. Slightly shambolic but a celebratory and rip-roaring finish with the winning points scored with literally seconds to go (where we were then ushered into the "big room" and given a standing ovation).

"Oh, go on then, one last pint..." and then I headed home for a quick bite to eat, say hello to Loup and then to bed.

Thanks so much to the lads for taking part. They all gave up their time on this - not just the 24 hours, but both the recovery and planning time, as well as getting the sponsors in the first place. It really means a lot to us, that people are so willing to offer so much. Also, a big thanks to Sunnybank Social Club for providing the resources and support that we needed to allow us to get on with it.

In the end, we should raise a couple of pounds over two grand. ...I love it when a plan comes together!!!

Tuesday, 26 October 2010

Another guest blog - Elvis speaks !

Elvis suits on and we’ re ready to rock,
Spirits are high so start the clock.

Ambleside’ s glorious but here comes the rain,
10 miles in and already there’ s pain.

Old stories and banter help us along,
But legs start to tire; we’ ve got to stay strong.

A sit down in Kendal, for a much needed snack,
Then on through the towns, we’ re still on track.

Last push to Ingleton, boy this is tough,
We’ ve made it halfway, but we’ re all feeling rough.

A couple of pints and a bite to eat,
Then back to the room to tend to our feet.

Blisters are big and have started to weep,
Now patched up with plasters, we need a good sleep.

Alarm goes at six; we need to get going,
30 miles left and the tiredness is showing.

Motivational messages keep buzzing through,
And support from the locals is too good to be true.

We’ re on the canal, 10 miles and we’ re there,
It’ s boggy and rough but now we don’ t care.

Round the last bend and everyone’ s cheering
Fireworks go off, “ Let’ s get the beer in” .

Hugs and kisses from those that we greet,
Five pals from Silsden have pulled off this feat

63 miles, that’ s what we did,
High-Fives from Evan, that was for you kid!

Jamie Cunningham

Sunday, 24 October 2010

We're caught in a trap...

Yesterday was an awesome day to report on. It started at 9am (well, for us - the Elvii had been on the road since early morning) with Evan shouting "Ready, steady, go!" and approx 30 kids and parents, mainly from Silsden schools, set off from Silsden - headed to Skipton. I took Evan by car to meeting points at Kildwick, Cononley, Bradley, Snaygill and then finally at Skipton where we had some very kindly provided, and very well earned, free chips! (thanks!).

We then headed up to Gargrave to meet up with the Elvises (not sure of the proper plural of Elvis). Evan provided "high-5s" and hopefully inspiration for the final push and then Grandad Silsden took him home. I then stuck with them to try and provide support, not to mention Red Bull. 

I was only there for the last couple of hours but seeing the reaction on the roads was brilliant. Every beep of a passing horn or someone smiling from a barge seemed to provide a little shot of adrenalin. As we headed past local landmarks (Farnhill pinnacle, White Lion, Jackson's Bridge, Allotments, Youth club field) we knew we were nearly home and, as darkness fell, the last mile was completed in moonlight.

I saw first hand how much effort these guys put in and at points you could see that every single step was hurting them so so much. However, once we could see the bridge they got their last wind and the Elvises did what they do best (well...) and they strode home to a chorus of Suspicious Minds. Which was soon, thankfully, replaced by a cacophony of cheering and fireworks.

The atmosphere in the pub afternoon summed up the day - a great community effort and something which makes us feel very proud to be a part of. 

Friday, 22 October 2010

Guest blog from Evan's Mum - Big Update

Firstly, a MASSIVE, MASSIVE, thank you to everyone who has supported Evan's Big Journey so far.  Your help and support is mindblowing and we never ever thought we'd reach this point so quickly. When we started off back in July, we launched our campaign with a minimum target of 45k which, at the time, we'd estimated would cover the op, accommodation and flights.  A little further down the line, the hospital in St Louis advised that Evan would also benefit from a further operation to lengthen his heel cords, this would increase the benefits of the SDR surgery but comes with an extra cost and hostpital stay (within the month we will be there).  He also has a program of physio to follow for over a year following the op and with the NHS cuts, we will need to go private to get this (we obviously do what we can every day but we're not trained to teach someone to walk!).  So, I guess what I'm saying is that although we've reached our original 45k target which is amazing, we need to keep going.  Please continue to support our remaining events (as they're all fantastic events, fundraising or not!) to try and pay for all the additional costs and any hidden extras that crop up along the way.  Rest assured, we will not spend a single penny that isn't required to give Evan the best out of this once in a lifetime opportunity and whatever is left will be passed onto another child desperate for this wonderful operation.

Monday, 11 October 2010

The day after the day after the night before...

Two days ago (as I write this) we were just tucking into our starters at the beginning of one of the biggest and best nights that I, and many people we have spoken to since, can remember. On top of that, 10 hours previously I was in the midst of quite possibly one of the best ever attended Coffee Mornings that Silsden has ever seen. 

I have been thinking what to write and I simply cant put down in words how it felt to be at both those events. The coffee morning was simply stupendous - shoulder to shoulder. A massive and truly fantastic COMMUNITY event. We try not to single people out as there are so many people working behind the scenes who we couldn't do all of this without, but in this instance we really need to mention Katy who was the driving force of this - very ably assisted by the incomparable Yummy Mummies (and assorted other helpers). People were literally queueing up to get in and then looking round and saying "I cant believe there are so many people here". 

After a mad dash around in the afternoon, the ball was upon us. Final touches and flourishes were applied as bedecked and bejewelled members of "Team Evan" (an ever growing team - everyone welcome) congregated for our show-piece event. Without doubt the star of the show was Evan himself, who made a cameo appearance before being whisked off back to bed, at the end of a very busy day for him. 

The rest of the evening is a whirl - a pretty lady did a speech, some guy managed to get the video to play, another guy held it all together perfectly while another guy watched on what has been a massive effort on his part. People joined in, had a laugh, fell asleep, fell over, made new friends, renewed old friends, danced (even me!), drank, and generally partied and partied and partied. As someone said, "It was like a really good wedding do". Oh yes, and we raised a shed-load of money in the process - but at the time, it just didnt feel like it was the main reason we were there ~ which is what we wanted to aim for. 

It's a cliche, but there was so much "love in the room". I just wish we could go back and bottle it ! 

Monday, 4 October 2010

A Big Week on our Big Journey

Things are going great, if not a bit "hell for leather" right now. So, a mad-dash update - as best I can. We crashed through the £30k barrier last week - which was £10k in just 8 days. However, a lot of that was money from the ball tickets - so was a definite spike. Still need to keep going to get that last quarter. Crikey, we are down to the last quarter - so far, so quickly... awesome!

On Saturday we attended "Buster's Bash" which was fantastic - not just because the guys are helping to fundraise - but because it was a great, great, night. Met some brilliant people. Hope we can make it next year! On Sunday, the Yummy Mummies (assisted by Loup, Maya & Evan) did a bag pack at the Co-op in Silsden. Today (Monday) was the first day of "Week of Evan" at work, we had a very successful tombola and planned for the ducking stool tomorrow. The finale is the dress down day on Friday. Then, of course, it's "EVAN'S BIG BALL" on Saturday (tickets only available for 24 hours now....) and if that wasnt enough it's "KATY'S COFFEE MORNING" in the morning. St James' church. (on a personal note, we also need to get Maya to a tap show recital in the middle of all that!)

If you want a ticket to the ball, there is still time. Meal, Auction, Entertainment and DJ - plus Evan will be there as well (at the start - form an orderly queue.... ). If you are in the area, please pop into the Coffee morning. It's building up to be a massive event. Get there early - fetch the kids, fetch your gran, but fetch your wallet. Come on - once we have raised the money (and hopefully had fun in the meantime) we can then leave you alone and we can all go back to having a normal, boring life. What will we all do with our time once this is all over....

See you Saturday ?

Monday, 27 September 2010

Andrew's Little Journey

At around 5pm yesterday I found myself at the top of Ingleborough ~ after completing the third of the three (Yorkshire) peaks. Which in itself was a feat, as 10 minutes previously  I had been struck down with cramp in both calves - so I nearly had to be good to my word that I would crawl round if I had to.

Against his better judgement, I had been able to beg, cajole and in the end, partly emotionally blackmail my colleague and friend Nigel to come with me (as well as Sarah - another colleague). Which was a good thing, as everyone else had buggered off in front of us (excuse the colloquialism). I hadn't realised how steep and tricky (for me - not being the best at heights) the last bit was going to be and when I got to the top, I wasn't exactly sure I could make it back down a particular stretch. Luckily, Nigel offered support, guidance and eventually reminded me that there were two ways down - on foot or in a helicopter. If I was worried about going on telly in normal circumstances, I was sure as hell not going to be on Look North that way. So, I managed to get myself down and we then ambled back home. As it turns out, most people cant see a yard in front of their faces on top of Ingleborough. Which in my case might have been a blessing in disguise and I wouldnt have known what I was letting myself in for....

Earlier in the day, we had scooted up Pen-y-Ghent with around 38 others, including Maya (who I was SO, SO, proud of) and Grandad Skipton. They headed back home and the rest of us pressed on to Whernside and beyond. The trek to the base of Whernside took us in the opposite direction as the Cyclo-cross riders (400+ of them!) - which seems like an interesting pursuit. (Where "interesting" = "what the ....").

Anyway, we got back in one piece - I didnt really have a target time, but given no real preparation (other than running up and down the stairs at home, which is bizzarely representative for Ingleborough) I think I was quietly chuffed with 11 hours 20. Probably, the best part of 4 hours behind the ones who had buggered off initially (excuse the colloquialism again) ~ but we made it.

There are plenty of obvious parallels to what we are doing for Evan - it's a massive undertaking and there are times when we are sat on top of a hill, not sure we can make it down the other side but there are so many people who are there to help and it's going to be such an achievement that we simply cant not do it.

In terms of events, this is a big couple of weeks - we have had the race night and 3 peaks (which both should raise decent sums) and we have Buster's Bash and Evan's Big Ball coming up in consecutive weeks and there are a number of sponsored events which have been really well supported as well. Thanks again!!

Tuesday, 21 September 2010

Cold suet pud!

Hello again. When it comes to writing this blog, in some respects it's a case of everything stays the same, and everything is different. It's the same in that we are still hectic, still on track for January and still constantly bewildered and overwhelmed by people's generosity.

The "different", well that's how many different people are helping out, in so many different ways and the different experiences that brings. For someone who loves to be sequestered in their comfort zone, mine is a small black dot on the horizon. I guess that should be a good thing...

Well, the standard update - I will try and fit in what I can (as ever, massive apologies for those I have missed off). Upcoming is one of the first "official events" ~ the race night @ SBS HO (tickets still available, and this isnt an "SBS do" - anyone can go), i'm doing the 3peaks on Sunday which Dynamo Joe is arranging and to which im dragging (in one case, almost literally) my colleagues Nigel and Sarah. Maya (and Grandparents' Skipton) are doing just Pen-y-ghent. If anyone wishes to sponsor Maya - please get in touch - she would be made up, as she is really proud that she is doing something to help. (

Loup is continuing to put the final stages to the ball (as is Wayne, if we can pin him down...) - pretty nerve wracking all round and thanks to some very kind people it will raise even more money. If your name is down, please let her have the cash - if it isnt, there is plenty of time to still grab a ticket. Should be a good night (well, for us at least as we are "staying over" - a night out - shock!)

On the same day of the ball, Katy (and helpers) are doing the largest coffee morning ever (it seems) - please pop by if you can.

Special mention must go to the bonkers but incredibly fabulous guy who swam from Kildwick to Silsden because the algae stopped him swimming a loch, as well as the Yummy Mummies taking over BBG on Friday. Thanks all.

Aireview in Silsden are also planing a fundraising day for Evan on Friday October 1st as are other local schools (such as Greatwood in Skipton this coming Friday, and First Steps in Skipton).

Then, there is the trip itself which I guess we should start planning soon. To be honest, we have sent the passports off and are hopefully going to get some news on accommodation tomorrow, and the flights shortly. In comparison to everything going on at the moment (the above plus day jobs, wife and 3 kids), the fact that we have to get 7 people to US and back over a 5 week period and on 4 different flights with all of the stuff around phones, internet access, local transport and the fact it will be "6 below" while we are there seems like childs-play... :)

Tuesday, 14 September 2010


The kids are back at school, the nights are drawing in, and things are speeding up. We have the ball - which is moving from the planning phase to the "get cash" & planning phases, and then into the last minute panic phase in a week or so. Loup is doing a great job with this. We also have started selling our "WIN CHRISTMAS" tickets which we hope will play a major part in the fundraising. As ever, if you want more details get in touch.

Having had a good few pieces of coverage recently, so many people are getting in touch. For instance, I met with 3 great guys tonight who are hoping to raise a sizeable chunk from a "do" they are having - and then returned home to see about 14 emails in my inbox from people who wanted to help.

As I have mentioned before, we couldnt do this without the assistance of some brilliant individuals. It would be unfair to name names, as everyone's efforts are so much appreciated. However, here are a few examples: There are a few people at work who have offered so much help - even though they have plenty going on themselves. They are the engine room, of our operations at SBS. There are also people who offer seemingly undying support and enthusiasm - which is a rare commodity "in the current climate". Outside of work, a new friend is constantly coming up with new ideas and has boundless energy. Parents and teachers at both schools, and at Sam's nursery, are so willing to get involved that we can hardly keep up with them. Another brilliant friend is working tirelessly to bring a few "key items" together and is doing a fantastic job. Nearly last but not least - we also have had so much support from our family that we cannot say thanks enough. The final group of brilliant people are the ones who live in my house, with me - my family. That's why we are doing it, not just for Evan, but for all of us.... and we do appreciate how lucky we are.

With the kids being back at school, it's got a bit tiring this week - looking forward to an unexpected day off on Saturday and then allowing Loup the same on Sunday - before loads and loads of stuff kicks in ~ the final pushes before the main event. I need to get my head (and body) around doing the 3 peaks, a 24 hour snooker challenge and no doubt being forced to dance at the ball - all in the next 6 weeks. Oh yes, and there is Christmas in there somewhere, as well. busy, busy, busy, but we know we have the right people behind us.

Thanks again!

Monday, 6 September 2010


OK, Sorry to break the bad news, but summer is over ! Well,... it's September, it's dark, it's raining and the kids are back at school, so it seems about time for a Christmas raffle. Woh... ~ don't all shout at once! Think of it this way ~ we are only 140 days away from Evan's first appointment in St Louis, so 111 days to Christmas seems almost next week by comparison.

Anyway, the "Evan's Big Journey - WIN CHRISTMAS" raffle is here. It is one of our key events, so we are really hopeful that you will be able to support it. We understand that a lot of people have already sponsored, donated, bought events tickets, are wearing wristbands, etc. However, we hope you will agree that this is really a prize worth winning. It's taken a lot of organising and had support from some truly generous people ~ with more prizes to come, making the prize even bigger.

If you are interested, please take a look at the website and click on the "WIN CHRISTMAS" tab for more info If you are interested, please get in touch. We will hopefully start selling tickets in the next day or so.

Basically, it's one big prize with one lucky winner. Current prize value is more than £1,000! Thanks again for your help and support.

Saturday, 4 September 2010

142 days

Well, it's only a day since my last blog....but, last night we got an update from St Louis and have been given a date. Our first pre-op appointment will be on 24th January next year with the SDR operation itself 3 days later. Very interesting, exciting and slightly scary news - it sort of makes it real (if it wasnt already).

I know it's difficult to keep asking for your continued help but I guess that now we have a target date as well as a target amount it's hopefully easier (?) to see what we have to do. We are pretty confident that all of the events and activities that we have planned will get us there - but we wouldnt be able to do it without you guys.

I have just had a chat about this with Ev, and explained that it's now 142 sleeps and the big news is that Scooby and Shaggy are chasing a monster in San Francisco bay. Now that's a problem....

Friday, 3 September 2010

Been busy...

Hello fellow journey(wo)men, apologies for the lack of blog recently. Been busy. Took a couple of weeks off - week one was to truly recharge the batteries and week two was to recover from week one. Really good times - quality time with Loup and the kids. Then had to go back to work and attempt to return to my "day job", but in all honestly (and here's hoping that a few people arent reading this...) it has been very difficult because of the sheer volume of "journey stuff" that we have had to catch up on. 

However, on my last day before I returned to work I visited Twitterland (which, in my opinion, is the severely underrated little brother of the noisy elder sibling Facebook...) and was amazingly lucky enough to hit a vein of generosity. Long story short, is that we generated more than 3000 website hits in 2 days (previously 2000 in 2 months) and a number of donations - some from celebrities - which led to a slightly surreal couple of days, and emails in my inbox that we could never have expected. However, while it is fantastic to get celebrity patronage, it is equally heart warming (probably more so - sorry CW...) to get the smaller donation from a student or a handwritten note and donation from someone who perhaps doesnt have so much to spare. That said, we can absolutely guarantee that EVERY single donation, offer of well wishes, kind thought, piece of sponsorship, event, suggestion, etc is so absolutely very much appreciated. Sometimes I think we run out of superlatives and it can seem trite to have to repeat our thanks - but we are really, really, really, so appreciative. 

Anyway, some "Parish notes" are probably required ~ as you might have seen earlier this week, we got past a major milestone and went into 5 figures. We are probably now on about £11,000 ~ which is obviously 25% of the way - Fantastic. Lynda is working on the charity ball (a few tickets are still available) and things are coming together in that respect - please dont make her chase too much for the cash (believe me - I know what she's like when she wants money off you....;). We have got the latest batch of wristbands and there are plenty of spares if you wish to help sell them and spread the word - if you want to take some, please let us know. A number of events are already in the pipeline, including (and massive apologies for those not mentioned) a Ceilidh, a gig, a dance/band night, more sponsored walks, race night, darts+doms night and the "Yummy Mummys" are still threatening to launch a calendar.... hopefully more news on this shortly....

Anyway, me and Evan's Mum (a.k.a the wife) promised ourselves that we might actually get chance to see each other tonight (that plan's working out well?) ~ so I must go. 

One final thought ~ CHRISTMAS IS COMING !!! 

Sunday, 22 August 2010

All good fun...

Crikey, crikey, crikey. Things are starting to fall into place, thanks to some very fantastic support all round. We have had great coverage in the Craven Herald, Keighley News and Telegraph & Argus - MASSIVE thanks to all involved. Evan took his new found "fame" all in his stride, as ever. Lynda is starting to pick up the work related to the fundraising ball which we hope will be brilliant, but a big undertaking for her and her organising team. Not only will this hopefully raise some ££££ but will be a good celebration as well. I've got a few bits and bobs on the go - my "big fundraising thing" which is very nearly ready to publicise - just need to dot a few i's and cross a few t's, a 24 hour sponsored snooker thing with the lads up at the Sunnybank - which will have a competition element as well (more dots and crosses before can publicise - please bear with us) and also a gig in January next year - which we hope we will be the icing on the cake and be the final fundraising event, so an excuse for a bloody good party... will be playing for us.

In terms of the op, we have received the paperwork from the wonderful team at St Louis and are just working through it.

Right, off to bed... - we are in the middle of a very much needed two week break (even if I do say it myself) and it has been great to spend some time with the kids. Took Evan and Maya to Ella's birthday party today, which was great - while Sam went Motorcrossing with Loup. He was full of it when he came back. He's really come on these last couple of weeks. Cant believe he is starting school (well, nursery @ Aireview - so just half days) in a couple of weeks. (£28 for school shoes...???... but dont get me started on that). Maya has been doing the real summer holiday thing of playing out until late and then just collapsing as soon as she comes in. All good fun.

Wednesday, 11 August 2010

Going potty

erm, where to start.... It's been a bit hectic - even by recent standards - got a couple of weeks off work shortly and we all need it. Time to do some chilling, and have some quality time with the kids... The walk was brill - just what we hoped for and we beat the rain (and I got to have a pint with THE Dynamo Joe! - who is going to help us out with a couple of things, such as a mass 3 peaks walk on 24th September - more details to follow). Other events are really starting to pile up. One of the things that is really coming together is a Charity ball - if you want details, please get in touch with Lynda - but tables are already starting to go, it's going to be first come (with the cash), first served.... We never expected so much demand - so we do really really really apologise for anyone who is disappointed. Another thing is my big Christmas Raffle. I hope to be able to "launch" this the week after next. Our friends are back from Spain now - think we have managed to leave a little bit of activity for Wayne to sort out ;)

I have also got things coming together for a gig. Check out - they will be playing for us at Sunnybank Social Club (Silsden) on Friday 14th January 2011. Im really hoping that we can have this as an "end of fundraising party" - just need a few things to come together and to get across the line.

Lynda is trying to keep up and put events on the Facebook group and we are going to try and keep the website updated for those folks not on there.

As ever, we are amazed (but maybe we shouldnt be) at how much time and effort people are willing to expend on our behalf. It's truly heartening - and in "the current climate" you wouldnt really think it would be easy getting people to part with money but it's happening. We are very lucky.

Saturday, 7 August 2010

Another great week ! ~ more to come !!

Another great week, supported by great people. The latest delivery of (300) wristbands have arrived and been distributed - just waiting for the proceeds to roll in (should make £1000 from these) - apologies for not getting them to everyone in the quantities that you needed. However, we do have a MASSIVE order (3000!) on the way - eta end August. Why do we need so many ? - well, watch this space but we have a really great opportunity (and 3000 might not be enough - crikey!)

There are a couple of massive things in the pipleline. My own personal project is coming on really well and we had an unexpected and amazing piece of news during the week to help with this. Again, watch this space - the target for this is £20k. We will need everyone's help on this shortly.

We are also very hopeful of the opportunity to host a Fundraising Ball in November. If you are interested in taking a table (most likely £400 for table of 10) let us know. However, still early days - more details to follow.

As well as these big things - it is actually the individual events which are really heartening. Ged's 3 peaks walk, T-dog's bike ride, Mike H 3 peaks run, Gary swimming a loch, Grandma Skipton's DVD's, QUINGO, Race night, Clive and his mates from the branch planning a 56 mile run, the coffee mornings, other sponsored walks and the other ones that I have certainly missed off (sorry - im writing this in battle-conditions, being jumped on by Sam while Evan re-enacts last weeks "101 ways to leave a game-show"). Not to forget the engine room back at work - which is all the people helping to sort things out and the people who are picking up my "day job".

Finally, hope to see you this afternoon. It's important to us that we keep this personal and that everyone gets a chance to interact with Evan (and Maya & Sam) and that he gets to see the people who are involved. However, if you cant make it - please dont worry, there will be plenty of chances to come.

Thanks again !

Tuesday, 3 August 2010

Just another day...

An interesting day today - started the same way as usual (kids, bedlam, tired) and ended the same way as usual (kids, bedlam, tired). However, in between there was so much good stuff. Had a bit of a quiet start (did a bit of design work on my big idea ~ more on that in due course, but it's all starting to come together) then took Evan into work to meet Loup at work and introduce him to a few of the people who have heard so much about him. He was on absolute top form - if we had coached him to be a perfect advert for his campaign we couldn't have done it better - but we didn't, that's just him.

We then had an appointment at the hospital - his annual check-up with his orthopaedic surgeon. I was a bit worried about it and that they might try to warn us off, as the treatment is so unknown over here. Couldn't be further from the truth. When I said the expectation that we had was that he might walk unaided, the reaction was simple - they just nodded their head as if to think it was perfectly normal. It all seems so surreal but I don't think we are dealing with magic beans here. Still need to be aware that it's a long, long road and going to be hard work for everyone involved - not least Evan.

Well, back to it. Probably need to pop by and say hello to Loup who is now sorting passports out... Looks like the wristbands are somewhere between Leeds and Birmingham and, with a fair head wind up the M1, might be with us tomorrow. That said, they are flying out and I may need to ration them - apologies if we cant give you as many as you would like. However, the next batch are due to be ordered straight away and this time - it's a seriously big order.

Thanks again for everyone's support - it's getting to the point where we have pretty much lost track of exactly everybody who has played a part and the spreadsheet that we tried to keep up to date is well behind track. We know who you all are though.

Friday, 30 July 2010

Walk for Evan - Saturday 7th August - 4pm - Aireville Park

The last few days have been really great - overwhelming (my new favourite adjective), but great. However, one thing that we are keen to ensure happens is that we involve Evan in as much of this as possible and that everyone who wants to, gets chance to meet and speak to him. It's amazing that so many people have got involved and given time, money and effort and they havent even met him. So, we have decided to arrange a "Walk for Evan" next Saturday (7th) at 4pm in Aireville park. Meeting up at the swimming pool car park and walking down towards the play-area. Literally, a couple of hundred yards. So it shouldnt take more than an hour of your time.

It isn't a fundraiser (although there might be some buckets there....) and is partly about awareness, but it's mostly about having the chance for Evan to meet the people who are joining him on his journey. Its also an opportunity for our various groups (work, family, friends, etc) to intermingle. Oh, and by the way - we wont be far away from Herriots - so the "networking" might gravitate towards there....

In terms of the awareness bit, we are hoping to get some local press coverage and take some photos, video, etc. To that end, we thought it would be a nice idea for people to wear either something blue or something orange (matching the the colours of the logo on his website). If you need something orange, the next batch of wristbands (minimum donation £3...) should hopefully be available ;)

Please feel free to join us ~ if you are near Skipton it should only take an hour or so out of your day. It would be great to make this a real "personal" kick-off to the journey.

Fetch the kids, they can play in the park. Fetch other adults, they can play in the pub.

Wednesday, 28 July 2010

The start of a big journey

Wow - what a 24 hours.

Even though we promised ourselves we wouldnt, we maintained a vigil of the gmail account. However, we called it a day at 10:30pm. If only we had waited 25 minutes, for at 10:55pm we received an email from the wonderful people at St Louis Children Hospital. Basically it said, "we feel that Evan is an excellent candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help him very significantly. " and "If he has the surgery we expect the following improvements: ~ (including) he will walk independently in protected environments and may need a cane in the outdoors and community.". Absolutely fantastic, overwhleming and truly, truly, life changing. 

When we told Evan his reaction was, "well - thats a bit mixxy - im very nervous but also excited" and "are we going today?"

Facebook, phones, blackberry and mobiles went into overdrive and work has been manic - but fabulously manic.

So, it starts now - we have a few plans and we need to get organised in terms of co-ordinating events. It's going to take a little while for the news to settle in and for us to get our heads round it. However, we will provide more details soon - then we will definitely need some helpers. From the messages we have received already, we know we are so lucky to have such a good supply to hand. 

Thanks for everything so far - it's going to be a long way so let's get going..... 

Friday, 23 July 2010

Great start (before we have even started)

An interesting week...our main concern throughout has always been to wait for, and hopefully receive, the "ok" from St Louis. However, how things have progressed this week has been phenomenal. Loads of great support from loads of great people. Too many to mention here, for now...

Last night's SBS IT Quiz was great - although it was the first "event" I have attended for Evan's Big Journey, and im not really one for "centre-stage"... it was great though (as expected ~ they always are) and in the end we made £912 from the raffle, "Super Reverse Bingo" and a few other bits. Brilliant!!! We have actually now raised more than £2000 and we havent even started yet...

For those of you who have helped, Evan has created a little something ~ please feel free to take a look (requires Facebook....) ~ simply click on the link below:

Wednesday, 21 July 2010

The screening room

Hi, Just wanted to post a quick update to say that St Louis have confirmed that they have received the package, and have been able to unpack the data from the disks ! Which is a great step. So, Evan is now "in the screening room" and he should be screened in the next two weeks. Fingers firmly crossed.

So, while the support and messages (and cash!) that we have had this week are absolutely fantastic (even more than we can say !!!), it is still at an early stage. We SO want this to happen - as it will make a massive difference to Evan. Those of you who know him well, and who have seen the videos of what they can do with SDR will truly understand ~ and, in time, we will introduce Evan to everyone who hasnt been fortunate enough to have met him. However, there is a chance that it wont come off (but please, please, please keep those fingers crossed) ~ so if we seem a little reticent about it, until we find out - i'm sure you will understand.

Thanks again, to everyone who has helped make this week truly bonkers. (as Mr D.Rascal would say).

Tuesday, 20 July 2010


...and we're really, really happy with them. Bright orange, with clear black writing- quality looks good as well. Brilliant value at just £3 (suggested donation). However, we are already down from 200 to about 130. Dont worry - already going to order another batch... If you want one at work, see myself, Lynda, Nigel W or Ewan L. They know where they are and where the money goes.

We are also going to try and take them to school drop off / pick-ups but obviously there aren't many days left and it's usually chaos - so please bear with us - we will try our best to do this. If you do want one at school - please take exact change (£3) and try and catch us.

Alternatively, drop myself or Lynda an FB message and we will try to reserve one for you (while stocks last).

Thanks in advance !

Monday, 19 July 2010

Whirlwind start

I was going to write a note about how the last 48 hours have been a total blur and that we had a great day yesterday aided and abetted by brilliant people. Which was followed by an as good day today. Which started off with someone donating a £65 prize before 9o'clock and a raffle almost springing up out of nowhere with, at a one point, someone selling £100 of raffle tickets in about half-hour and the retail board not knowing what hit them. Very much looking forward to the IT quiz on Thursday - I need to buy a few people a drink !!!

But im not going to write about that - because when I got home, Evan was in bed but not yet asleep. He crept out of bed and was on the landing, all blue-eyes and "hello dad". Followed by "shall we have a hug, and then a goodnight-kiss and you can tell me about your day, and I can tell you about mine".... "shall we?".

I can hear the "awwww bless" and people diving for the "like" button already ~ but don't be fooled ~ I know a delay tactic when I hear one and I told him so. To which I got the a grin which conceded he'd been rumbled. Still, it was lovely....

Thursday, 15 July 2010

Bit overwhelmed

It's been a bit of a whirlwind this week. We had the x-rays on Monday, sent them off on Tuesday and have been crossing our fingers ever since. I didn't think it was possible, but the kind offers of help from people wanting to "get going" keep increasing. People have given us money (which if you do this and I look a bit shocked - i'm still getting used to it...), they have offered their time and resources as well as suggesting great ideas. I so, so, hope that we get the "ok" - not only for Evan (although primarily so, there is a selfish end to this) but so that we can actually follow this through. Im sure it will be one of the most rewarding things that people have been involved with - it certainly will be for us, and I doubt we will stop then. There are other kids out there that need this help and it's terrible that it's not provided on the NHS (but that's another blog for another day). As soon as we hear from St Louis, we will let you know. BTW - we will hopefully have the first batch of wristbands in the next day or so. They will be a "must have" item, so be on the lookout for them.

That was "Thought for the day", goodnight.

Monday, 12 July 2010

Got them !!!

Great news on the data collecting today. Picked up the MRI scan from the Drs (thanks to Dr W), picked up the video of Evan in movement (thanks to Grandma Skipton) and then went to the hospital. We had the x-rays ok but when it came to getting them on DVD we had a couple of enquiring questions and someone "just popping off to check....". I had to take Sam to the car (as per usual) and so had a nervous wait. Loup (erm, that's Lynda to everyone else) arrived back at the car with Evan and, in her handbag, a DVD !!!!!!

Just need to collate it all this evening, ready to be sent off to St Louis tomorrow, but this is the most significant step yet. From what we have heard, once they receive this (hopefully by the end of the week) you then get an answer back within a couple of weeks. So we may well know before the end of July.... good, but nervous times!

Thanks again for everyone's kind wishes of support, so far.

Saturday, 10 July 2010

Its all coming along....

Good news this morning in the form of an email from our GP. He had requested MRI scans on CD from hospital and they have arrived! Just need to get the x-rays on Monday and everything will be good to send off...

Tuesday, 6 July 2010

One small step nearer

Just a quick post to say that we have got an appointment for x-rays next monday. Whether we actually get out of the hospital with them on CD is a different matter but it's still a bit of positive news. Certainly one small step nearer. Thanks very much to the people involved in sorting this out.

PS - we are so absolutely overwhelmed by the generosity and warmth of people - sometimes from unlikely sources, or even sources we didnt even know about. Thank-you !

PPS - catch the video on the facebook site - it's really good.

Saturday, 3 July 2010

Day to day

I guess its easy to get caught up in the whole fundraising stuff and maybe people who dont know Evan wont understand what impact it will really make to him. (Even if there is a tiny improvement, as a result). Last week we went out for the day, and took a visit to the park at Ilkley where there is a lovely little kids playground. As Sam and Maya ran into the distance, Evan and I drove around (well, he sat and I wheeled) looking to choose something. Of course, he chose the obstacle course and we embarked on our own "Total Wipeout" game. We timed ourselves getting from one end to the other and he did really well, and enjoyed it so much, but I had to hold him all the way and in a hot day, we worked up a sweat. In the end, we had a couple of goes and he enjoyed it so much - but during that time, Sam and Maya had been on probably 10 different things. If we get to St Louis and have the op he wont become Dynamo Joe straight away (if you need to ask, you dont need to know), but if he gets a chance to play more independently, it will mean so much.

Wednesday, 30 June 2010


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

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).

Tuesday, 22 June 2010

4063 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 !

Monday, 21 June 2010

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!

Thursday, 17 June 2010


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.

Sunday, 13 June 2010

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...)

Monday, 7 June 2010

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 !

Sunday, 6 June 2010

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.

Saturday, 5 June 2010

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

Thursday, 3 June 2010

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 (!/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) 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

The beginning...


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...