A long overdue update

7 Feb


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.


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