16th August 2017
In the final weeks before surgery we still have some exciting events planned to get us over the finish line with our fundraising and keep us occupied so we aren't worrying too much 😬 Next week Mary and Andy will be putting on a show in Plymouth on the 23rd at a special fundraising gig, and Angela and friends at MMU are flexing both their baking and sales skills at a Bake Sale on the 22nd. There's even a rumour that my delicious vegan cupcakes might make an appearance there 🍰
15th August 2017
We have made it over £30k which is incredible. This fundraising effort has come from family and friends, acquaintances and even a few strangers. We are incredibly grateful for all the hard work and generosity of everyone involved, all of you who set up fundraisers, all of you who have donated and all of you who have cared in some way. We don't yet have final costing but as we have already been told the hospital are trying to keep costs below 40k we are no longer going to push new fundraising to make sure we don't go too much over target. Anyone who has upcoming events or still wants to help, all money raised will go towards surgery or after care and is very much appreciated. We are being mindful that there are many people out there who need help in one way or another and Mandy is fortunate enough to know she can now access the help she needs. 💜🌟🌈🌻
10th August 2017
Hi everyone! We've had some good news that we'd like to share with you all. Whilst we have been fundraising for surgery abroad we've been busy behind the scenes talking to many other doctors and surgeons who we hoped might be able to give us different options to choose from. This week we have been to see a neurosurgeon in the UK who is happy to take Mandy on as a patient with a view to perform the surgery she needs. This surgeon is well versed in the specific surgery she needs (it's also performed on Down's Syndrome and RA patients) but has never performed it on an EDS patient. Speaking to many people over the last year about why the surgery isn't available in the UK has led us to the understanding that it is not necessarily the surgery itself, or the particular complexity of EDS patients that prevents them being operated on, but simply the lack of UK based research and evidence that suggests it will have a positive impact on EDS related CCI/AAI symptoms. Our new neurosurgeon is keen to put an end to this and Mandy will be the first and only UK participant in such a study at this time.
From our point of view, having the surgery in the UK gives us a few benefits:
- Mandy will be able to recover at home
- We'll have access to after care and support provided by the same team who performed the surgery
- It'll cost less
- Hopefully it will lead to others not needing to go abroad in the future
- We don't have to make ourselves look stupid trying to speak in Spanish
So, we're getting the surgery performed in the UK under private healthcare. We're dropping our target for fundraising down to £40k which is the estimate provided to us by the surgeon for the surgery itself and the necessary after care. The next step is for Mandy to undergo an initial round of information gathering (scans, interviews, grading etc) to establish a baseline for the research outcomes. We are then hoping to get the surgery booked in for October or November depending on busy people's diaries.
We want to thank you all for supporting us this far and for all the work you've put into fundraising for us. Everything that we've raised so far is still going towards paying for surgery and I have no doubt that we'll get the remainder of the money together in time for when it is needed. We shall keep you updated as things progress.
- Matt and Mandy
8th August 2017
Hi Guys - Sorry it has taken so long to get the list of the prize winners up for the SupportMandy Draw! Been Hectic at work!
Can I ask people to tag winners if you can? Also - to receive prizes I think the best way is to get if off the person you bought your ticket off - So contact your point of purchase please and I will make sure they get your prize to give to you!
I just want to thank everyone again for your generous support - As we announced in the video we raised a brilliant £1850.00!
This is not the end tho - I shall still be fundraising and ask if you to kindly continue to support! Also if you have any ideas for fundraising of your own please get in contact and I will do my very best to help!
Vanessa and Barton.
6th August 2017
Look at all these awesome people: Lorna and the team and customers of Nationwide Sutton in Ashfield for raising £215 with their holiday hamper raffle. Stevie and the St Ives hotel for raising £118 with their bath and body hamper raffle. False Advertising and friends for the sold out charity gig on Friday (total raised TBC). Janet for her recent tabletop sale raising £115. Amy for raising £104 from collection boxes at her work. Josie for face painting at the Lytham festival.
Thank you all for your time and effort. You're a good lot. 🙌
5th August 2017
If you're at Lytham festival tonight get your face painted by Josie, she's helping raise money for surgery by making everyone happy!
31st July 2017
Phew. It has been a busy few days recently and I've been away from Facebook in deep meditation preparing body and soul for Tough Mudder. I'm back and rested and want to say thanks to Simon Keir Amy and Oliver for joining me on that adventure, returning with a few cuts, bruises and donations for Mandy. While I was busy thinking about how closely my life resembled the training montage from Rocky some other things were going on which I'd like to share with you:
- Krissy Claire Nikki and friends have had a quiz and raffle night whilst also auctioning an awesome paintballing day.
- Andrew manned a fundraising stall at the St Annes Music, Arts and Crafts Fair
- Vanessa Barton Gillian and co. held a raffle with some fabulous prizes
- Mandy hosted a fundraising tea and games night
- The Mobile Chaos Motorcycle Club raised money with a sponsored ride and night of entertainment at The Saddle Inn
- Tanya Rose and M&Co in St Annes have been fundraising in lots of different ways
- Julie Davidson - Chic French Fashion and Janet have been organising fundraising clothes parties
- Lots of lovely people have had our collection boxes in various places collecting up lots of pennies and pounds
Thank you to everyone who has been helping us out and keeping up the momentum. You all get a fist bump 👊 💖
31st July 2017
Hi guys - technical difficulties - Cant live stream from this page - so please watch on Vanessa Tweed Facebook..... It is a public post!
31st July 2017
🌟🌟🌟Last Chance to win some amazing prizes in the spectacular Norn Iron Raffle! 🌟🌟🌟
Draw taking place tonight live on this Facebook page at 7.30pm where you will get to see Barton and Vanessa live and in colour picking out the very lucky winners!
Tune in!! 💻📱🖥😉
Read more on Facebook
25th July 2017
Matt is taking over social media for a while, I'm not coping well with the symptoms and the stress of the situation. I want to apologise in advance for being quiet and take the opportunity to say thank you to everyone for upcoming events. I like to thank everyone personally but I don't feel able to keep up at the moment so please know that you are very much appreciated and Matt will continue to share and try to thank you all personally.