Thursday, 26 July 2012

Ambassadorial duties - Monday 23rd July

Monday was simply another "one of those days". We'd known for a week or so that this would be the day that everything was announced in respect of Evan being chosen as Yorkshire Flame Ambassador, and had been in discussions with Amy (our contact) about press releases, quotes from Evan, possible media opportunities and early stages of planning for the trip to London.

On the whole, we are happy to do pretty much anything - but the one thing that we never did during the fundraising was television. (We had a couple of opportunities but for various reasons chose not to). However, this felt different - it wasnt for us as such. Who is it for ? At the most basic level,this is an opportunity for Evan, but in the wider sense it's a recognition of everything that has surrounded Evan's Big Journey and everything since.

So when Amy asked if we would do some TV (local stuff - Calendar and Look North) - we had a chat and said we would, but only if it was pre-recorded. We were anxious enough about this, and the pressure of live didnt feel right for either of us - and Amy was able to sort this.

As Monday arrived, so did Summer, and then a Calendar reporter - camera in hand. I hadnt really thought what this would involve - if we didnt think about it, it wouldnt happen. Right ? Wrong !

They dont mess about these guys - moving from story to story - and as we were saying Hi to Victoria, Ev came out (v.nervous) and to get him to warm up I sat him on my knee. That was my first mistake. "Ah, great shot - we'll go with that....".Within what felt like about a minute after they arrived we were ready to go. I got asked a few questions (cant really remember what I said), then it was Loup's turn and finally we did some "family play in the background" scenes and it was "in the can" and they were gone. 

We then had a few hours to kill - couple of tweets, facebook updates and other messages but before we could do the next bit of media stuff we had to get back to real-life as Evan had an orthotics appointment at Airedale to get fitted for some new splints. Once that was done we rather nervously headed off to Leeds.

At the Calendar studios, we were ushered into a room just off the main office and were joined by the presenters who had a quick chat about what this was all about. Ev's SDR buddy Ben is a regular visitor to the Calendar studios and one of the presenters (Tina) had done the Walk to School report. So they were well-versed on the background.

Initially, we thought just Loup and Ev would do the tv but (for some reason) I said i'd have a go as well  and they took us up on the offer. Ev and Maya (plus Mum and Dad) were reasonably subdued but Sam was getting ever excited.

We did the piece (I wont give away any "behind the scenes" info...) and, somewhat miraculously, the first take was good enough. So, we had a quick tour of the gallery and were soon heading off.
Highlight of the experience was seeing Tina asking "Where's Sam?" and looking around nervously when she had lost sight of him. Fair enough, given the value of the kit around. Funny nevertheless.
Biggest regret was that it happened so fast that we didnt take the chance to get photos and authographs, etc. Although I suspect it wont be the last time we visit those studios....

Next up was a trip across Leeds to "the beeb" and this time, it was decided that "Loup and Ev" were the perfect match to "Christa and Harry" so myself, Sam and Maya watched from the dressing room. We did remember the camera this time and got some good snaps. As you can see, Sam remained "not subdued".

Last but not least, Loup, Maya and Evan then headed downstairs in the building to do a piece on Radio Leeds. I didnt get chance to hear it, as it was live, and I was with Sam in the (notorious?) BBC canteen / waiting area. Loup thinks it went ok, but like everything else that day, it went in a blur and we'll try and track down the various pieces of coverage and put them on the website shortly. (I have a bit of a backlog in this regard - but i'm on the case....)

Finally, we headed off out for a family meal - time to sit down and chance to reflect. Who knows where this opportunity will take us - and we are so grateful for the chance. Yes,we are so far away from our comfort zone that it is a mere dot in the distance, but I know we are the better off for it - even when it feels scarier than that :)

What next ? Probably some more of "those days"....

Tuesday, 24 July 2012

"Team Evan" - Tuesday 24th July

This is just a quick update to say a big THANK-YOU to each and every member of "Team Evan". 

From the very first people who got involved and convinced us we were doing the right thing to people who beep their horns when Evan walks past in the rain, to the "new members" (including our new celebrity friends...) who assisted with the media stuff yesterday. If you're reading this, you're in the team ! 

Some days are more normal than others, some are more difficult than others, but every day is interesting. 

However, every "like", every "retweet", every new friend or follower helps us, spurs us on, and keeps us going. 


Monday, 23 July 2012

Paralympic Flame Ambassador - Monday 23rd July

Turn back a few weeks.

I’m stood at the back of the school hall, it’s the end of the assembly that followed Evan’s Walk to School, and I’m stood next to Amy from the attendant entourage who turns to me and says “could you do more of this ?”. Full of adrenalin and pride, with that feeling of being able to do anything under the warm glow of Evan’s Big Journey, “of course”, I say.

Thinking nothing more of it, and once all of the “Walk to School” excitement calms down, life goes on. Time to pick Maya up from dancing, I check my emails while waiting.

One from Amazon, one from Vistaprint, one for Mum about her caravan, another one from Vistaprint and one asking if Ev will be Yorkshire & Humberside Flame Ambassador for the Paralympics, a couple of updates from twitter, one about an online survey......


One asking if Ev will be Yorkshire & Humberside Flame Ambassador for the Paralympics..

“...this summer we will be welcoming the Paralympic flame to Yorkshire and we would like to ask Evan to be the Yorkshire representative who brings the torch back to the county.

We were all hugely inspired by him and feel that he is the perfect person to ‘do the honour’. We also sent the story to LOCOG (London Organising Committee of the Olympic Games) who thought the story was fantastic and are also in agreement that Evan would be the ideal representative to bring the flame to Yorkshire.”


Just couldn’t stop smiling - no grinning, from ear to ear - and couldn’t wait to get back to family to share the news. Amazing. So we replied quickly - yes, of course. Whatever it entailed. Yes - of course.

As more details came through, it got more exciting and more real.

the part we would like Evan to be involved in is attending the flame splitting ceremony in Trafalgar Square, London on Friday 24th August

What on earth might this mean.... More TV for sure, crowds, Seb Coe ? Boris Johnson ? David Cameron ? No idea - but it seems big. No..... BIG. Very BIG. Scary BIG. However, literally, the Chance of a Lifetime.

Then a really tiny setback - we can’t tell anyone until it’s announced officially.

That was 7 weeks ago - and since then the crescendo which surrounds the Olympics has grown and grown. We attended the torch relay and couldn't get within 500 yards of Skipton High St which was 10 deep. The crowds were immense, and we couldn't help wondering what Trafalgar Square would be like.....

In that 7 weeks we have had to keep it under our hat but now, and no apologies for the mixing of metaphors, the cat is out of the bag.

It gave me time to think - this couldn't have happened without Miss Court getting the school involved with the Walk to School project;
 - that couldn't have happened unless Ev had been to STL;
 - that couldn't have happened unless everyone we knew - all our friends, family, colleagues and complete strangers - pitched in and got us there;
 - that couldn't have happened unless Loup pushed for us to investigate SDR;
 - that couldn't have happened unless we found out about it;
 - that couldn't have happened unless the wonderful Dr Park was doing it in the first place.
 - all of that couldn't have happened unless we had been lucky enough to have Evan survive in the first place.

SDR Changes Lives.

What next ?

Well, the timing couldn't be better - with Evan having wowed the cream of Yorkshire’s journalists at the awards on Wednesday (see previous post) his fame now precedes him (check out Twitter, for example) and when Amy was speaking to various people they already knew who he was. As I post this, we have “press booked” for this morning and are heading to Leeds this afternoon for a couple of TV recordings. Keep an eye on Calendar and Look North....

More blog updates later on that.

Then we have to start thinking about the trip itself and preparing for what that actually entails. I’m sure Amy, Tom and the team will continue to look after us as superbly as they have already. At the minute we are excited, nervous and simply can't wait...

Thursday, 19 July 2012

Return of the (lovely) beast... Wednesday 18th July

There is a distinct difference (for us) between "Evan's Big Journey" and "Evan's journey".

"Evan's journey" is the one he takes every day. Every little step - the physio, the ever increasing bits of independent walking, the walk to school - but also the frustrations that we don't get chance to do more, that he isn't progressing as much as he might and the worries that we might tire him out too much and for what the future holds for him.

"Evan's Big Journey" is the behemoth, the giant, the beast that we created to help us get Evan to St Louis, to change his life and to change ours. It's a nice beast - one we are massively proud of creating,one that changed our lives, and, in as many ways, changed the lives of those around us. One that we owe so much to. However, on the whole these days, its appearances are less frequent and we easily forget how exhilarating and tiring those can be.

It reappeared with great force with the whole "walk to school" thing and we thought that would be that. Until, that is, Ev returned from school with a note in his school bag;

"invite / o2 / Evan / award / Leeds ballet / July / Mark / phone number....". 

That's all we had to go from... So, I made the call and spoke to Mark - who happened to be producing the O2 Yorkshire Media Awards at the Leeds Ballet Centre, and they wanted Evan to present an award. We want to give Evan every opportunity that comes along - but I wasn't sure what to do with this one. Did they know that Ev was an 8 year old boy... after all, if you google the name there are two, and one is a well renowned Australian journalist ( But no, it was our version - Mark was a great guy and we spoke for a few minutes about what Evan could/nt do (and that he might get nervous) and we kept in touch. 

Things got closer and, keeping things under wraps, we got increasingly excited as the event came upon us and we got a preview of the script, suggested questions, etc. I had to arrange a "night off" a "residential work thing" I was doing but the team were great in acknowledging it was such a great experience - and how right they were....

We arrived at Leeds Ballet Centre and were ushered to the "green room" (yes, I did just type that....) and over the period of the next couple of hours were introduced to, and had the chance to chat to, some actors, a top British dress designer and a boxing champ along with some lovely "back stage people" (too many names to remember - but they were all so helpful).

We were then taken backstage, while out front they were watching the video of Evan's walk to school, and then he was up (with his glamorous assistant, Mum...). Ushered onto the stage, he had decided to go for his crutches as he feels a bit safer with them. 

The reaction was amazing. A crowd of practically complete strangers giving our little boy a standing ovation. On their feet, cheering and clapping.



The presenter (Emma) asked Evan a couple of questions and then asked him to name the winner (which we'd had a sneaky look at beforehand so he could practice). All he had to do was to say the name. No problem. Simply say the name. 

However, he took a step forward and said, "I can now reveal that the winner is" <pause> "Paul Walker". 

The reaction was amazing - such a mixed reaction, people looked like they were crying, laughing and perhaps both. The following is a clip of the crowd reaction as he came off. 

We managed to hang around for a little while and watched a couple more awards until Ev got tired and then we headed home. It had been a long day...

When I got back to the hotel ("residential work thing", remember...) I checked my phone - seeing that Evan's pic had been tweeted - by a real, proper, tv celeb. Then, cue the usual flurry over the next day or so of further twitter activity, emails, photo uploads, facebook, etc.

"Evan's Big Journey" is a modern day beast, a multi-online-faced creature, but an amazing and benevolent beast. It took us to wonderful places, and continues to do so, we're very lucky....