Evie’s Everest appeal – help needed

5 Jun

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Hello folks,

Remarkably, Wes is starting school in September!  Whilst things are still up in the air around SDR, he’s doing brilliantly and will be joining his big sister at ‘big school’, like any other five-year-old.

Now Wes is doing so well, we wanted to share the story of a special little girl with similar challenges…

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Evie Lerner stopped hitting milestones from about 9 months, and had a prolonged period of diagnosis and assessments at hospital and in home by numerous professionals which is still ongoing. Evie has not had a specific diagnosis but her last MRI scan showed an abnormality, a white matter brain condition called hypo-myelination, meaning messages and processing of information are distorted.

Evie’s parents hope to one day understand what has caused this but to date genetic and other tests have not yet found the cause, so we have no prognosis – but we have been told by the paediatrician this is a life long condition and there is no current treatment.  There are – however – a lot of complex therapies and courses of treatment that might help Evie out, many of which aren’t available on the NHS.

So, for anyone who supported Wes through tough times, please do consider lending your help or good wishes to Evie’s appeal, if only by liking her Facebook page, which can be found here:

https://www.facebook.com/EviesEverest/

Thanks a million

A longer overdue update

13 Mar

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Hi everyone,

We’re really sorry for the radio silence over the last year.    There has been much happening, though not entirely as we expected…

At the start of last year, Wes had been accepted for SDR surgery in the USA.  However, because he’d been in hospital over Christmas with pneumonia, we’d had the (unwanted) opportunity to see how he coped with longer spells on a ward.   Because of this, we were starting to feel it might be better to delay surgery for another year (he was still only 3!) and let him grow up a little before flying out to St Louis for a multi-week spell in hospital.

His consultants in Leeds had also suggested that an updated MRI scan would give them the best possible chance to see how his cerebral palsy had developed.  However, because of his bout of pneumonia, they were keen to take his adenoids out – to improve his breathing – before the general anesthetic.  Wes also had a slightly wonky eye, meaning he was on list to have this squint fixed.  Yikes.

Over many months, the net result of this was three trips to the hospital for surgery / general anesthetics, which was traumatic (more so for us, than Wes!).  Thankfully, everything went very well – the folks at the LGI were brilliant: Wes’ breathing improved, his eye is now working perfectly and, in autumn, he finally got his MRI scan.

Whilst this had all been going on, we’d been trying to knock down the garage and turn the space into a ground floor bedroom for Wes.  This has proved frighteningly difficult (Yorkshire Water had thoughtfully run 4 sewers under the house!), so we decided to move to somewhere more suitable for Wes’ future needs.

So, three general an aesthetics, one house move and dozens of regular checkups later, we finally got the results of the MRI.  Crushingly, this revealed Wes had another condition – “dyskinesia” – which hadn’t been properly detected before.    Dyskinesia essentially creates unpredictable movement which, unlike Wes’ existing spasticity, couldn’t be fixed by SDR.  In fact, SDR could make it far worse, taking away the stiffness and leaving Wes unable to co-ordinate any movement.

As such folks, for now, SDR surgery in the USA is off the cards.

Whilst the St Louis surgeons will still operate, the view of the UK team is it could make Wes’ quality of life much worse.  This has been a very difficult call to make.  Positively, there is a good chance that this might change as medical science develops or Wes’ condition is reviewed.  For now, Wes is focusing on strength, physio and generally just being a little boy.

Everything that everyone’s kindly raised is still safely tucked away for Wes, for when it’s needed.  We’re still hopeful that, eventually, SDR or a similar operation may benefit him.  Whilst it’s a long way off, if the money doesn’t get used by Wes’ 25th birthday, the funds with Tree of Hope will be passed on to other children with disabilities.

In the meantime, putting hospitals, scans and doctors to one side, Wes is otherwise doing brilliantly.  He goes to an amazing nursery, has lots of little pals and will be starting school this September!  He’s happy, chatty and increasingly willful!

This will probably be the last update on this site for a while, but we’ll keep it running for any major developments.   Again, huge thanks to everyone who has helped so much.

 

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(& helpers…x)

A long overdue update

7 Feb

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We’re really sorry for the shortage of updates recently.  The last few months have been a hectic mixture of good news and bad news @ WW HQ.    Unfortunately Wes managed to catch pneumonia over Christmas and had to spend a few days in hospital.  Thankfully, thanks to some brilliant care from the team at LGI, he’s completely bounced back and returned to being his usual smiley self!

Much more positively, though, we’ve raised and saved enough for Wes to have surgery in the USA and to cover all of the immediate rehabilitation, kit and follow-up care.  Many thanks once again to everyone who helped get Wes this far – it seemed like an impossible mountain to climb at the height of the recession in 2012, but, thanks to everyone’s brilliant support, we’ve got there.* Everything raised is now tucked away safely with the wonderful people at Tree of Hope, who will look after the dosh until Wes needs it.

Unfortunately, we’ve had a bit of a setback on this front.  As many of you might know, we had been hoping to fly Wes out to St Louis this summer, where he’s been provisionally accepted by Dr TS Park, a world expert in SDR surgery.

However, at a recent consultation with Wes’ UK doctors, they spotted for the first time signs of another, potentially difficult, underlying condition.  This is a related syndrome to spasticity (which the SDR surgery would help with) called dyskinesia (you can read more about this here).  Essentially, dyskinesia is the inability of the brain to co-ordinate limbs.  Unfortunately, the SDR surgery doesn’t help with this and could – in many instances – actually make things worse for Wes.  It’s enormously complex to spot based on video evidence alone, which is doubtless part of the reason the USA team didn’t refer to it when they were carrying out their remote assessment of Wes.

At this stage it’s difficult to know the extent to which dyskinesia would be problem for Wes, if at all.  What this does mean is further tests – such as an MRI scan, which Wes should have in the next few weeks.  However, what this does mean is that the USA is almost certainly off the cards, this year at least.

It goes without saying we’re all far from chuffed with this, but continue to remain optimistic. In the meantime, we’re going to continue spending a lot of time with Wes on physiotherapy, hydrotherapy and building his strength up.    Hopefully the tests will come back with the right results and we can start making plans again for Wes to head out to the USA next year.

As a result of this, we’re going to stop updating this blog quite so frequently, but hope to have some further (good!) news later on in the year.

Most positively, though, Wes couldn’t be happier at the moment.  Having recovered from his Christmas lurgi, he’s chatting away, laughing and enjoying playing with his friends at nursery.   With a bit more effort and a little more time, we’re confident he’ll make some big steps forward.

Thanks a million everyone.

Wes & helpers x

 

* With so many other brilliant causes out there, Wesley’s Wish will be shutting down for donations.  If anyone’s got another marathon or bake sale left in them, the folks at Guiseley Lions, Physcap and Tree of Hope are doing amazing work and would love your support.

Massive thanks to Fairfax Masonic Lodge

6 Sep

Huge, huge thanks to the members of Fairfax Masonic Lodge, whose good works have raised over £500 for Wesley’s Wish.

This is a massive boost to what we’re trying to achieve and will be a big help with physiotherapy and equipment, both before and after SDR.

Here’s a very happy Wes accepting the cheque!

 

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A big fundraising update and a lot of thanks

13 Jul

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As many of you will be aware, we got the good news in February that Wes was an ideal candidate for SDR surgery in the USA.   Since then a lot of time has gone into planning when this could happen – balancing Wes’ needs and development with the availability of surgery slots.  At one point, it looked as though we might be flying out to St Louis this year.  However, after a lot of advice from specialists, we’ve decided to slightly postpone surgery ‘til July 2015.

Over the next year, this will give Wes time to build more strength, suppleness and generally mature enough to get the most out of his time in St Louis.  Following the operation, Wes needs 5 weeks of intensive outpatient physiotherapy and rehabilitation.  This is a tough demand for any kid, so being slightly older will really help out with this.

The great news is, though, thanks to everyone’s amazing help, we’ve now raised and saved enough money to cover the operation and the immediate after care.

Special thanks must go to:

  • The Bank of England Leeds Half Marathon Team – for the second year in a row raising well over £3,000 for Wes
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  • Guiseley Lions for massive donations from the charity football match, beer festival and for being generally awesome people
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  • Guiseley AFC & supporters for organising a Walk for Wesley, which raised £665
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  • Tony and the team at The Station Pub, for the recent Guiseley Music Festival, which raised over £1,200!
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  • Sue and Simon Richmond, the lovely people at Bleach Mill House, for putting on a coffee and  cakes day for Wes.
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  • Margaret and John Barnes and the other members of The Aireborough Gilbert & Sullivan Society for their fantastic production of The Mikado earlier this year and generous donations to Wes.
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  • The good people of Nunwood Consulting Ltd. for their recent cake sale and silent auction
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  • Nuffield Health Guiseley for not only putting on the inaugural Toughfield Event, but also a lovely summer fair to support Wes
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  • Rachael Robinson & Mareli Ridgeway for single-handedly taking on The Yorkshire 3 Peaks on one of the hottest days of the year.  Amazing stuff!
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  • Ed & the lads who took on the South Downs Way
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  • Nevis Sport in Kendal for their collections for Wes
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  • The brave men of St Mary’s School who volunteered to wax their legs for Wes (ouch!) & all the Year 10 students who helped out in less painful ways!
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  • Wes’ Nana, Jackie, and Aunt, Gina,  for organising another successful ‘Swish’
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  • Wesley’s grandma’s neighbour, Pam, who really kindly donated her 60th birthday money

 

This is in addition to the massive list of wonderful people who have already helped out at the start of this year and in 2013.  Huge thanks everyone: we’re over the moon to be able to give Wes this chance.

If you’re not watching the Tour de France….then check this out

5 Jul

Swish

 

 

We’re pleased to announce that Wes’ nanna, Jackie, and aunt, Gina, are yet again organising their very own swish for Wesley’s Wish today.

It’s taking place at Jackie’s house, ‘The Nook’, Ackenthwaite, Milnthorpe, Cumbria. LA7 7DQ from 3pm.

If anyone’s in the area, there’s still room if you’d like to attend – just drop us an email timandcatherine@wesleyswish.org

Huge thanks to everyone who’s organised this one!

July 12th Three Peaks Challenge – we need your help!

29 May

 This year, on 12th July, a crack team will once again take on the Yorkshire 3 Peaks Challenge. 

Can you join us?

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The Yorkshire Three Peaks Challenge takes in the peaks of Pen-y-ghent, Whernside and Ingleborough, in this order, normally in under 12 hours.   The peaks are usefully arranged in a triangle, with the River Ribble and two minor B roads between them. The total walking distance is 39.2km (24.5 miles).

Here’s the plan:

o   No entry costs: so every penny you raise goes to Wesley’s Wish

o   We’ll set up your JustGiving page – so you’re all set for raising sponsorship

o   If you’re generally fit, but haven’t done much walking recently, then don’t worry about being left behind

o   Full kit list and plans for the day to follow

o   A beer or two at the end of it!

Last year’s Yorkshire 3 Peaks Challenge was one of 2013’s best events, raising masses towards Wes’ operation, coupled with a great day and some truly stunning views.

We’re still seeking volunteers for this year’s event – on Saturday 12th July – so please  sign up by dropping  us a note on Facebook or email timandcatherine@wesleyswish.org

 

Some pictures of 2013:

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A big update on loads of amazing stuff

14 May

 

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Like all special needs chairs, this one is a triumph of elegant design. At least Wes has great hair.

 

It’s been a busy old time for Wes, who has been amazingly busy with physio over the last few weeks, putting into practice some of the new skills he learned during his two weeks at The Bobath Centre in London.  He’s also had the joy of trying out several new chairs and has a new walker on order.

Whilst Wes has been working hard, others have been working even harder to help him out…

 

  • Massive thanks to the great people at Nuffield Health, who put on their inaugural ‘Toughfield’ event in aid of Wes.  Furthermore, they’ve donated a year’s free membership to the beer festival auction (see below).  Amazing stuff.

 

  • A big shout out to everyone who ran The Leeds Half Marathon last Sunday – both from The Station Pub and The Bank of England.   It’s a tough old race, with a lot of hard hills, so hats off to everyone who put themselves through it!  Thanks guys.

 

  • Anne Little at HSBC has signed herself up to an amazing sequence of fundraising events – starting off with 102 km bike ride, the Otley Sportiva on the 17th May.   Thanks a million Anne!

 

  • The brilliant Rachel Robinson is organising a Girls Night In party on Friday 16th May.  Huge thanks Rachel!

 

  • Coming up very shortly – The Guiseley Lions Beer Festival @ Coopers, this Friday (16th), Saturday and Sunday.  Tickets are still available here.  £5 entry gets you a souvenir glass, two free drinks and a selection of great beers to choose from.  Plus an auction – featuring a year’s free gym membership and a signed Leeds United shirt, to name but a few!

 

  • And  – the crowning glory of May Bank Holiday – Guiseley Music Festival @ The Station Pub on Sunday 25th May.  This promises to be an absolutely fantastic day, with a great line up courtesy of Tony and team.  More details here – a great day out for anyone.

 

Massive, massive thanks everyone.

Alongside all of this, we’re trying to figure out the best time to take Wes our to St Louis for the SDR operation.  Unfortunately, we didn’t get our preferred dates of July or August due to waiting lists – so more on this to follow.

100 miles of extreme biking – bosh!

14 Apr

Huge thanks from everyone at Wesley’s Wish  HQ to the brave men who have just completed the South Downs Way.

One of the UK’s toughest endurance challenges, this amounts to just over 100 miles of tough, off-road cycling. Completed in just 2 days!

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As a result of knackering their legs, the lads have raised a small fortune for Wes. A massive contribution to getting him out to the States this summer.

If anyone would still like to sponsor them, you can do so here:

 

http://www.justgiving.com/Barnaby-Whiteside

http://www.justgiving.com/BenAtkinson1

http://www.justgiving.com/Carl-Kevan

http://www.justgiving.com/EdKnight2014

http://www.justgiving.com/Sidey2014

http://www.justgiving.com/PaulRigby2014

http://www.justgiving.com/SamKnight2014

 

 

Thanks a million guys!

Support Wes and win a year’s free gym membership!

1 Apr

Could this be too good to true?   

Not if the amazing people at Nuffield Health in Guiseley, Shipley and Cottingley have anything to do with it!

These three clubs are putting on a one-of-a-kind sponsored boot camp to help raise funds for Wes’ operation in the USA:

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And it gets better still:

Nuffield are giving 1 year’s free gym membership to the person who raises the most sponsorship!

This is open to members and non-members of all fitness levels – to sign-up instantly please click here:

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For more details please click here

 Please do share this post with friends and family – the more people who get involved, the more we can do to help Wes.

Thanks a million everyone. 🙂