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.

Sunday, 17 August 2014

In limbo...

It’s been quite a while since we’ve been able to give you any news on the blog, so we’ve felt a little out of touch with our lovely friends and readers.

As we write now, it’s still a bit difficult – we are rather in limbo.

It’s been quite a turbulent time lately: we thought we were close to being given an operation date, then we weren’t, then we had some exciting news about funding, now we’re in limbo again… shall we tell you the whole story?

We reached our fundraising target back in May as you know – and due to the generosity of many people continuing so support us, the funds have continued to increase.  We are now up to £70,000. Thank you!

Setback
We hit a huge obstacle at about the same time that our active fundraising came to an end.  We were told that rules around NHS co-funding might prevent the SDR operation actually taking place. Elliot’s Haemophilia means that he has to have expensive drugs every other day to reduce his risk of spontaneous bleeds.  These drugs are needed more frequently to ensure his safety during the SDR operation and could potentially cost hundreds of thousands of pounds.   Obviously we would not be able to cover this cost but the NHS is not allowed to co-fund an operation that is partly being paid for out of private funds.

Together with Elliot’s medical teams we were trying to work out if there were ways around this for quite a while.  We considered a campaign for assistance from local politicians and even thought about restarting the fundraising. The Haemophilia team at Great Ormond Street finally decided it would be unethical for us to attempt to pay, because he could need more treatment than our funds could cover.

You can probably imagine that this was getting quite stressful.  We were beginning to wonder if we would ever work it out, when NHS England made an amazing announcement. They are going to fund 120 SDR operations across the UK.  We didn’t quite know how to react! We got straight onto the phone to Great Ormond Street who confirmed that they are one of the centres that will be funded.

Where does this leave us?
It means that the cost of the operation itself is likely to be fully funded.  This is, frankly, beyond our wildest dreams.  The funding of the haemophilia medication may no longer be an issue because we wouldn’t be co-funding.  Likely and may are in italics for good reason – we simply have not had any confirmation yet and there is a lot of work ahead for various NHS departments to agree the process.  We were recently on South Today talking about how difficult the delays are.

When we began our fundraising we could not have imagined that NHS England would have made this decision.  So what to do with the money that you have all raised? Over half of the funds were going to be dedicated to Elliot’s post-op physio for up to two years. 

We hope that you will be as delighted as we are to think that the funds could now be used to help Elliot’s rehabilitation for many years to come.  The NHS may provide a minimum amount of physiotherapy, but the reality of the operation and his condition means that he will need more intense support for many years to come. Being able to provide this privately will have an immeasurable effect on his mobility and hopefully many other life outcomes.

So what now?
Well, we are still in limbo! There is tentative suggestion of a surgery date in October. We are trying to limit our excitement at the moment until we know for sure,  but we promise we’ll keep you informed when we have news to share.

Thank you for continuing to keep us in your thoughts and support us with your well wishes.  We can’t wait until the post operation days when we can finally sit down with confidence and write all our thank you notes and tell you about Elliot’s progress.  That time will come, soon!



Thursday, 8 May 2014

You've done it

You've done it for Elliot.  You've collectively raised the £66,300 fundraising target, in only 6 months!

Even though we've watched the funds grow rapidly over the last few months, it still feels like the most amazing surprise.

A huge number of you have contributed your time, your own money, your talents and your enthusiasm. How can we possibly thank you enough? Hopefully you'll be able to follow Elliot's progress after the operation and see the huge impact that you, however you've been able to contribute, will have made to his mobility and quality of life.

We don't currently have an exact date for the operation but Great Ormond Street Hospital have told us that it should be well in advance of the summer holidays, so we'll get a date through soon and keep you all posted.

We've got one more thing to ask of you.  Very soon we will be writing a post about how you and we have achieved this together to share with other families who are going through the same stressful times.  We'll be asking you to share this far and wide so that we can increase the chance we will reach other families wanting SDR for their children, to let them know that it IS possible, it CAN be done!


We thought this would be a really long blog post but actually there's only so much we can say, and it's basically a very, very big THANK YOU.

Thursday, 17 April 2014

Easter Endurance Eggstravaganza for Elliot!

Here at Operation Elliot blog HQ we've just heard about an amazing challenge that two impressive Kayakers are undertaking for Elliot.

Edward Long and his kayaking partner Brad will be racing 125 miles from Devizes in Wiltshire to Westminster this weekend, along with 200 other kayakers.  We're exhausted just thinking about it!

Here's what the official race website says:
The Devizes to Westminster International Canoe Race starts in Devizes, Wiltshire and finishing just downstream of Westminster Bridge in central London, opposite the Houses of Parliament. The race has been held annually over the Easter Weekend since 1948.
The race is 125 miles long and has 77 portages. The first 52 miles are along the Kennet and Avon Canal to Reading, the next 55 miles are on the River Thames to Teddington. The final 17 mile section is on the tidal portion of the Thames.

Ed and Brad will be kayaking for about 22 hours straight, day and night - we really hope that the weather is kind to them over the weekend.  Their supporters have certainly been very generous, they have raised £1,229 so far, very nearly their target of £1,250 through their Justgiving site.

Here are some more photos of the pair training.  Good luck Ed and Brad, we're all rooting for you!



Saturday, 12 April 2014

Eating for Elliot!

This week we hear from Sophie Donovan and friends who completed a sponsored three-day purée diet for Operation Elliot, eating nothing but pureed meals and thickened water (apparently normal water was not allowed).  Sound disgusting? Well it was, just look at the photos below!  Sophie is a friend of Elliot's Mum Morwenna. Sophie and other fellow Speech and Language Therapists have together raised over £3,000 for Operation Elliot.

£3,000 for eating disgusting food.  Is it worth it? Well of course we think so!  Here's how Sophie, Helen and colleagues, and Becky, Jo, Shona, Nikki and Jules managed it:

Sophie, tell us what it was like to eat nothing but pureed meals for three days
Pretty grim! I was thirsty all the time despite making a real effort to keep my fluids up. The drinks were awful thickened! Smoothies were ok but I quickly got fed up with having sweet drinks all the time. I became desperate for water!

I made some soup for lunches and had puréed shepherds pie one night. They actually tasted ok but the food looks awful puréed. Not at all appetising, even when you're hungry! On Fri night I had puréed curry & rice which I just couldn't finish - it was all wrong, yuk.  My first normal meal tasted amazing. Pizza and a glass of crisp white wine has never tasted so good!

How did you keep going?
I had such a fantastic response from friends and colleagues which really helped keep me going, plus we all supported each other on Facebook which was fantastic (purée dieters and others from our UCL course). We shared notes about palatable foods and things to stock up on that were easy to transport around for snacks etc.

Anyway, that's enough from me! Here are some snippets from the others' Facebook food diaries:

Shona's Facebook Diary, Day One:
Day one of sponsored modified diet done. Harder than I thought. I have learned that thickened drinks really are awful. Tea is especially vile. Also getting a smooth texture in blended foods is difficult as I had to blend and then sieve some things. Also experimented with using the thickener as a soaking solution - soaked sandwiches anyone? Urghhhh!

Jules' Facebook Diary, Day One:
I've just encountered first pureed meal that I couldnt finish: scrambled eggs, veggie hotdogs and tomatoes. Just not right! Then tonic water thickened- fizzes over and was just unpalatable. However, black Earl grey tea (sweetened) was ok, and almost getting used to water being somewhere between wallpaper paste and frogspawn....At least it's for a good cause!

Jo's Facebook Diary, Day 3:
I've just had my last puréed meal - carrot, broccoli, potato with brown sauce for a bit of flavour, served up in one big splurge! And for pudding, treacle sponge pud and custard all blended together - SO sweet.

Reckon I'll have another thickened drink before bed. Looking forward to normal drinks more than anything tomorrow - I miss water the most. Still v thirsty.

A really big and heartfelt thanks to you all for your donations - together you have raised more than £250 through my challenge - with some more for me to forward when pledges are collected. Wonderful. I'm truly moved by your generosity and know that Elliot and his family are too x x

We certainly are, thanks to all of you for enduring what sounds like a truly horrible challenge!


Tuesday, 1 April 2014

Hard graft

Carrying on our posts about all the hard work our supporters have been doing, we also wanted to hear from Angela Cole, one of Elliot's family's oldest friends (duration, not age!).

Angela has been the coordination and brains behind some very successful events. The folk concert at Elliot's Granny's house raised a whopping £936.  Many thanks go to Ed and Mo for all their hard work, and the fantastic performers: Rod Jenkins & Black Tulip, Malcolm Bishop, Take Thackray, Frank Boyle, Bob Whitley, Sue Pugh & Dave Lambert.

And then there was the Zumba party, also Angela's doing.  Angela said "It went really well despite a terrible storm which kept quite a few away.  The session was very energetic and enjoyable and we had masses of cakes and scones to raffle".  The Zumba raised over £200, a fantastic amount - and thanks must go to Claire Nightingale and the Two Riversmeet Leisure Centre who donated the sports hall. 

If any of you were at the Valentine's Dinner and Auction you'll know that the room looked stunning.
Angela after the hard work was done
















Well, it was Angela that did all this for us - she spent hours hand-making the amazing table centre pieces and generally making all the tables beautiful. She's a wonder, don't you think?

The success of the auction was down to lots of people, not least the very generous businesses and friends that donated holidays, collector's items and days out.  Without them, it simply wouldn't have happen. Here's a reminder of how generous people were - we had so many lots to auction!

And of course, the auction itself was run by our Star Wars celebrity extraordinaire Jack McKenzie and seasoned charity auctioneer Juliet Pull.  We are incredibly grateful to both of them for helping us out and getting some fantastic prices!

Here are some more photos of the night, including early photos of the children 'helping' to set up the room!! :)






Loadsa fun getting ready for the auction night!

Some of the impressive auction lots


Thursday, 20 March 2014

How did we get here?!

We're using the word 'overwhelmed' a lot at the moment.  We're overwhelmed that we've reached over £43k, getting so close to our goal for Elliot.  We're overwhelmed at the generosity of donations and support we've received. And we often feel overwhelmed by the sheer hard work of our friends and family and even people we don't know.  Our supporters have been organising events, drumming up support from their business and social networks, and generally being amazing.

We've asked a few of our friends who've organised some fantastic events over the last few weeks to tell us a little bit about their successes over the next few blog posts.  Whether you've organised or supported an event, made a donation or shared our campaign with your friends, you've helped us get to where we are - ever closer to getting Elliot the operation he needs!

First up are Hanna and Izzie Butler, Mother and Daughter team extraordinaire.  Hanna has been pounding the pavements of Southbourne Grove encouraging local traders to support us.  You might remember the offers on our Facebook page before Christmas about how traders were helping us by donating a percentage of their takings on certain items. Hanna has continued her relentless work and the latest kindness is from HSBC who did a cake sale for customers last Monday.

Hanna's daughter Issie wanted to get in on the action to help her friend Elliot too.  We thought it would be cool to hear directly from Izze, so we asked her to tell us about her event:


Issie, Glitter Girl Queen!
1) How old are you Issie and how do you know Elliot?
I am 7 years old and I know Elliot because he used to go to Pre school with me and now he goes to my school.

2) Why did you want to organise an event?
Because Elliot has got problems with his legs and he needs lots of money to have an operation.  I wanted to help him because he is my friend.  I wanted to give him my Christmas money but Mummy & Daddy said it would be a good idea to try and do something to help him and raise more money.

3) And how did you come up with the Glitter Girls idea?
I had an idea for a party with dancing and all the things you do to get ready, like nails, and hair, and I came up with the Glitter Girls Disco Party. To start with it was just going to be my friends coming to my house, but Mummy thought more people might like to come.  We asked some friends and their Mummies if they would help us paint nails and do lots of beauty treatments.  We asked Father John if we could use the church hall for the party, and then Mummy and me went to lots of shops and asked them if they could donate things for it.  

4) What was the event like? Who came and what did you do at it?
All of my friends and some people from school came, as well as people from ballet and people from other schools who I didn’t know!  We had make up, hair crimping, face painting, make up, stick on earrings, glitter tattoos, nail painting, a pocket money stall and dancing.  My auntie Tanya, Evie & Freya’s Mummy and my dance teacher Yolanda all did dance routines for us.  It was lots of fun.  All the Daddies sold tea and cakes to the mums and dads, and the Mummies did the painting and stuff.

5) How much money did you raise?
We raised £800!  I sold tickets in the school playground with my friend Erin and we charged £1 for tickets and then on the day we asked for donations for the beauty treatments and the tea & coffee.

6) Wow, that's amazing! How did it make you feel?

It made me feel happy and excited.  

It made us feel happy and excited too, thank you so much for organising Glitter Girls for Elliot.