What is EDS?

A rare and very painful condition

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Please support Mel today. Donate what you can, fund raise and share Mel's story on social media. She needs your support!!

Melanie's Mission

We need your help to 'give Mel a chance at life!'

Meet Mel, a Biology Graduate from Newcastle University

Mel Graduated despite the odds, on a stretcher last year from Newcastle University

Welcome to Melanie's Mission

We are actively fundraising again and appealing for YOUR HELP to get Mel to Barcelona again after a recent setback following knee surgery

45001ABF-E28E-4564-ADD4-6DCA8F701212 — We had a trip to La Rambla / Barcelona & saw this beautiful fountain. I managed to sit very well but was very sore afterwards – and today, as expected! Thanks again for all the support! #melaniesmissiontolive💜 DONATE: 💜 https://www.paypal.me/melaniesMission2Live 💜https://www.gofundme.com/MelaniesMissionToLive 💜 http://www.melanies-mission-eds.org.uk/donate-now/ 💜Just Giving: https://www.justgiving.com/crowdfunding/melaniesmission2021
First trip out.

321ED552-B8F5-409C-B716-92BC88E8BF50 — Unfortunately we have had to postpone our return home, which was planned for this Sunday. Dr Gilete felt I need to stay longer to ensure I can sit up safely and seizure free before being confident and able to sign me fit to fly for the flight home…. & after […]

Postponed return home

CD5F5EC4-E0AE-477D-9809-97495BEE90D1 — Hi, So sorry for the silence for the last week or so, but I’ve been really quite poorly due to pain and an infection in my halo pins. I’ve spent all my time resting and being sick, and was struggling to even sit up to get to the toilet […]

Sitting up in my wheelchair after 6weeks

5D2229E4-5662-4348-BFD9-7E1FE63F4551 — Hi, So a lot has happened in a short space of time… one thing being the day we planned to reattach the halo, my neck started constantly clicking again and I had a seizure and stopped breathing… this was the first one post op. So, I was put back into […]

Post op update, mixed emotions

8B45314E-1732-4BE1-BAB1-05E24B33BC93 — So, today’s update isn’t very exciting. I’ve been very tired and in a lot of pain. We all decided it’s best for me to not sit up until the halo vest is back on, so I’m on bed rest in all my braces to keep me as safe as possible, […]

Sunday 23rd may

D8024FF2-FC72-4326-8D7E-770E90AE86C5 — Today’s been a better day! I’ve been awake all day, managed to eat 3meals for the first time in ages & then after a very long hard day operating Dr Gilete came to help me try and sit up in bed. We were all pretty nervous & my mum, Dr […]

Sitting up!

340E81A7-F558-4134-8482-02A10A73BD42 — So I’ve spent most of my time resting & in pain… But today seem to have turned a corner! During the surgery one of the things Dr Gilete found was that the bone had been resorbed , we think this is because of my osteoporosis but it’s not good at […]

Rough days

242B18F4-96CA-42AA-8C21-6F14773D55D8 — Well, today’s the day! I’m all scrubbed, gowned up and ready to go. Looking forward to not popping and cracking all the time & making the first steps in recovery… AGAIN. Round 5, but it’s exactly 4 years since my first admission here for the surgery that fixed me and […]

Surgery day- round 5

5A2D0DF3-4116-47D9-A99E-188F0E9A0B0F — Hi, I’ve been poorly for a couple of days with a UTI but luckily the iV antibiotics seem to be kicking in now! Just in time for my surgery tomorrow morning! I’m having the surgery then will be in a coma in ICU for a day or two, before coming […]

Day before surgery.. round 5

58CC7064-7382-4A43-B6DD-E4D28BBB9900 — Hi, So, the hospital decided surgery on a Saturday was a bad idea as there’s less staff in icu over the weekend, so I’m having it Monday morning instead. Ive had all the pre op tests and signed all the forms, so I’m just chilling in my halo until surgery […]

Surgery postponed

D9889F1B-860F-4027-B84A-97AEE4362A76 — What a week it’s been… and it’s only Wednesday! I came via air ambulance with a Lovely Paramedic Carl and ITU Dr Lee on board, Carl knew me from last time and they both looked after me really well. I had some oxygen and IV fluids and medications on the […]

Arriving at Teknon for the 5th time

56ECD561-D28F-47D1-9F7D-16CFFE08F449 — Hi, it’s me again (Leah)! Mel has had 11 seizures today alone, is in absolute agony and had hardly any sleep since Wednesday night…. she’s needing watched 24:7 & is as white as a sheet, we had to make our way to the airport for a private covid test today. […]

Covid testing & a rough night!

5C4AADCA-437F-4256-804A-E15D62E9E6EC — 🆘🆘URGENT!!!🆘🆘 Unfortunately Mel has gotten a lot worse!! She’s now needing her head held and a carer by her side 24/7 as she is having up to 12 seizures a day, while stopping breathing!!! She is getting rushed to Spain on Tuesday morning via emergency air ambulance with ITU team […]

Air ambulance booked- times running out!

0DBFD65D-BFF6-46CF-8017-4A0FB9375474 — 🆘🆘URGENT APPEAL🆘🆘 Mel’s PA here, I have been off sick which is why I haven’t had a chance to write anything, and Mel is far too unwell to post anything. Everything was going well as Mel was approaching the 3 month mark, when disaster struck!!! When turning Mel, we heard […]

Disaster – May 2021

ITV Tyne Tees update on #melaniesmissiontolive💜 from tonight’s news. I’m now home, and SO much better than I was! However, we are still desperately trying to raise the remaining funds that we owe and to fund the VITAL medication I need for my spinal fusion to fuse strong, as I […]

ITV April 2021 update

3A70E9D2-508D-4DCB-9408-C0E74B5C322B — BBC Look North update on #melaniesmissiontolive💜 from tonight’s news. As mentioned we are still desperately trying to raise the remaining funds that we owe and to fund the VITAL medication I need for my spinal fusion to fuse strong, as I have had worsening osteoporosis in my spine since the […]

BBC look north update April 2021

388A6093-93FF-4C27-9691-4BCD67520BB4 — Here is an update from Bbc radio Newcastle this morning about my progress. I’m still very tired and resting lots, got a new wheelchair yesterday- which is much better for my spine. I’ve found out the bone treatment I need to help my surgery be successful long term isn’t available […]

BBC radio update

246289A7-F045-4BA4-A71E-5A753DCD1A30 — “Waiting is the saddest part…” – inside out Disney 😭⏰ After the other days positive post about finally feeling human again & going for some fresh air for the first time in months…. it’s been fair to say, I’ve been feeling pretty sad & deflated. Usually by the time I […]

Sometimes waiting is the saddest part…

401374E6-775F-401A-86FF-1354B7CB9A6F — Has just had the best news ever…. “Itl turn out ALL RIGHT in the end – you’ll see” Mrs Potts” 🫖🥀 I had a low grade infection in the bone last time they operated- 1 year ago, & so took a super long course of oral antibiotics and they were […]

Itl turn out alright in the end – you’ll see

86AB46E8-0BCD-4F8F-88F3-BA0A9BCA1F85 — 💜”When the world says “give up”, HOPE whispers, “try one more time!” – The little Mermaid.🧜🏼‍♀️💜 Last night was a better night, i managed a few hours sleep rather than just the measly one I’ve been getting since surgery & although when I woke up I was in agony, I […]

Never give up

B3726BEA-D4B3-445A-ACD1-165720FF1FEE — Hi, I’ve not updated for a couple of days due to having a really tough time. I’ve only been getting an hours sleep by constantly falling asleep – so too tired to actually do anything, even to watch Netflix. Clearly I majorly overdid it sitting for 45mins… so I’ve had […]

Even miracles take a little time…

38C23D81-0C24-4675-952B-46C1F0D72859 — Today’s update… I thought I’d Write a checklist of symptoms & tick which have resolved so far- obviously nerves take a loooong time to recover and some things may never return fully but, progress is progress! 💜Seizures ☑️ 💜hiccups ☑️ 💜Unconsciousness☑️ 💜Rights sided paralysis☑️ 💜Tremors☑️ 💜Excruciating headaches☑️ 💜Nystagmus☑️ 💜Palpitations and […]

First day sitting post op- – day 6

2A512D55-C8D7-465C-A205-BEAD74838225 — ‼️After 14 seizures yesterday, screaming in agony and no more than 2hrs sleep since Monday night…. white as a sheet, we had to make our way to the airport for a private covid test. Lying on a stretcher getting my neck tractioned the entire journey to keep me stable and […]

Covid testing

AEF633C7-2A38-4A2B-8E88-2E004FAB6227 — Hi, it’s Leah here- Mel’s PA, Mel has massively deteriorated overnight, so I’m writing this post, as she’s unable to herself. Her skull is now slipping constantly- she pushes it back in, moves her fingers and it pops out again, compressing her brainstem. This is causes, loads of seizures, vomiting, […]

🆘URGENT APPEAL🆘

054954A9-96E4-495D-B489-5BB0D91ED612 — Time for an update…. a target has been set. £50K. So unfortunately things are getting worse scarily fast… everyday new symptoms appear- mainly serious neurological ones. My visions affected now with lightening flashes in my eyes and floaters. Excruciating headaches, vomiting, seizures, agonising pain in my head neck and spine […]

Disaster during the covid crisis!

Appeal video 2019

https://www.itv.com/news/tyne-tees/2019-05-31/woman-with-rare-genetic-condition-suffers-huge-setback-after-life-changing-surgery/

New appeal!

17BF78B0-E4A8-4F70-BE40-E1CF7D3115F3 — Just over 2yrs I’m from my fusion surgery, I was planning on posting a positive update telling you all how fantastically well I’ve been doing… how much I’m able to live my life, nights out weekly, concerts, volunteering & gaining experience in a Primary school in preparation for doing my […]

Bad news

B5901B5F-DC10-4935-A8A5-38C14F6E4426 — Hi, Everything’s a bit of a stress at the moment, it’s all a bit up in the air! My infection & vomiting got worse so Dr Gilete started me on more antibiotics straight away, a different antibiotic cream & a long course of strong oral antibiotics. They’ve taken cultures and […]

How to get home