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.