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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

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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!

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🆘🆘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!

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🆘🆘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

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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

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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

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“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…

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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

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💜”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

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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…

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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

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‼️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

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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🆘

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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!

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

New appeal!

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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