28th September 2017
Hi everyone. Sorry it's taken me some time to say anything. The surgery went very well and everyone is pleased with how it all looks. I have had some post op issues because of Ehlers Danlos Syndrome which got me into this mess to begin with, medication and gastric issues, POTS problems, shy bleeding and bruising veins, swallowing and jaw problems and my body in general not playing ball. Thankfully I have had wonderful surgeons, nurses and staff who have done a brilliant job of taking care of me and ensuring that they take EDS into account when treating me. I even have had the chef prepare me special meals everyday. I will be staying here in the hospital a little longer than I anticipated but hopefully will be home by Sunday. Thank you so very much to every single person who has donated, helped, shared, and organised fundraisers, without all your support I would still be struggling along. I am so grateful to have the opportunity to be operated on in the UK, my surgeon will monitor my progress over the next year and hopefully if all goes well other EDS patients who are also suffering may have the same chance I did. I am very hopeful for my future, although I know it will take lots of time, hard work and rest.
26th September 2017
Hi everyone. Mandy has had her surgery! 🎉 We've been a little quiet to make sure everything was going to go to plan but we're 3 days post-op now and everything is going well. Mandy has been doing a little bit of physio and resting a lot while her neck heals up. We're hopeful that the surgery she has had will reduce her symptoms but the process of healing will take between 6 months and a year so we won't know for sure until then. At the least she's now a lot safer and unlikely to get any worse. Here are some pictures of Mandy's new bionic neck...
20th September 2017
Thanks to a couple of people who have been looking after our collection boxes over the last few weeks. Natalie and her salon have raised £51 and Carice and The Hatters Cafe have raised £20. Thank you! x
10th September 2017
You guys are still busy, and we have a few people to thank today. Barton and Vanessa have been at it again, raising money with some of their friends with a performance of a comedy play 'Separate Beds'. Family members Peter, Ruth and Dot have been continuing their support, enlisting their friends to help us out. And thank you to some of our collection box hosts: Newton Shop, Trendies and The Saddle who have been supporting us throughout.
Thanks all we are very grateful for all your hard work 💜
25th August 2017
Thanks Mary, The Penguins and friends for organising what sounded like an excellent night of entertainment and dancing. They raised around £800 and had a boat load of fun. Thank you to everyone that went and all those who helped to organise and perform! 💃
24th August 2017
Thanks to Angela and Team Mandy at MMU for their very tasty looking bake sale. They raised £230 and helped many people hit their sugar quota for the day 🍰🍩🍪🎂🥧🎉
21st August 2017
I have been thinking about what I'm hoping for after surgery, nobody knows what symptoms will stay or alleviate or how long it will take for things to change. I know that it will be at least a year long of more resting and recovering but that doesn't mean things won't change. I'm thinking small but these small changes that I hope for will make a massive difference to my life:
⭐️ See my nephews and niece more often, and be out doors with them
⭐️ Spend more time with family and friends
⭐️ Go outside for something other than a hospital appointment
⭐️ Read a book
⭐️ Be able to sit up long enough to have a meal out
⭐️ Paint my own nails
⭐️Have a bath or shower with less help
⭐️ Go to a beach, a cold windy one would be fine
⭐️ Bake something
⭐️ Follow a conversation properly without losing words or thoughts
⭐️ Dry my hair
⭐️ Wear makeup
⭐️ Sit in the countryside
⭐️ Draw and paint
⭐️ Cuddle without pain
⭐️ Walk without fainting
⭐️ Smile real smiles more often
In reality I don't know how may of those things I can have back, how long it will take or how difficult it will be to get there but I'm going to try really hard! The most important thing is the surgery will stabilise me, I'm fully dislocating my neck which is very dangerous and that danger will no longer exist, but I can hope that I can slowly regain some life back too. I owe it to myself and everyone who is helping me get there 💜
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. 💜🌟🌈🌻
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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