Wednesday, 15 October 2014

Amazing news for Elliot!

We have some great news for you.

We've been quiet again, but for good reason. Today, Elliot has been admitted to Great Ormond Street Hospital for pre-Op checks. On Friday, all being well, he will have his operation.

The reason we've been quiet was to try and manage how much Elliot knows about it, to help him manage the anxiety he feels. We were concerned to ensure that school or other friends didn't find out and speak to him about it. Instead, we've been keeping him informed on a need-to-know basis and gradually working towards the news this week.

It's going to be a really hard few weeks, for all of our family.  Elliot's little brother and sister will be looked after by their Gran, but will miss Elliot and their Mum and Dad who, at various times, will both be away from our family home. But we believe this is a fabulous opportunity for Elliot and our excitement about the outcome helps to temper our nervousness.

Elliot isn't just having the SDR operation, he's also having orthopaedic surgery on his legs to compliment the SDR.  This will mean that his recovery might not show immediate results like other SDR operations can, but the benefit to Elliot will be immense.

Some of you will have seen our post about fundingannounced by NHS England a couple of months ago. Well, Elliot was accepted for this a few weeks ago. We were over the moon for obvious reasons, but it also meant there was no longer a question over who would fund potentially exponential costs of his Haemophilia drugs - everything is funded by our wonderful NHS.

In terms of the funds that you have helped us raise, you will be aware that over half of it was intended for physiotherapy.  This is still needed as local physiotherapy teams are under severe pressure and it is unclear whether they will be able to provide a sufficient service for patients recovering from the SDR operation. 

But what of the other half of the funds raised? We are hoping that no-one will object to us using this to provide physio therapy for more years to come, beyond the two years that we originally budgeted for. This will mean that we won't have to fundraise again for support for Elliot which he is bound to need if the effects of the operation are to be maintained.  If there are any objections, please do let us know.

You have helped make this happen - your support has been fundamental to allowing us to pursue even the thought of this operation with GoSH. We will provide regular updates on here to tell you about how our gorgeous Elliot is recovering.


James and Morwenna Gower.