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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


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7 days since I woke from my life saving full spinal fusion surgery…. & I did something nobody expected me to do….. Previous updated have detailed what was done during the 12hrs i was in theatre & the remarkable improvements I’ve seen so far… So today’s is just a short […]

7 days after waking up from full spinal fusion…. something ...


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Today’s update So it’s been 4 days since I woke up from my medically induced coma….. The changed the broken cobalt alloy rod, and added a new one on that side also, so there’s three cervical rods on the left and the two already In situ on the right. I’m […]

4 days since waking



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So, tomorrow’s the big day… where I’m getting the remainder of my spine fused to mean I have a full spinal fusion from skull to pelvis. The nerves are real this time… I think it’s worse this time as I know exactly what to expect! I know the pain will […]

Halo fitted


Hi. Molly here Mels mam. Mel went to theatre about 1hr ago. She was really nervous. I was told last time she had less than a 50% chance of pulling through and her body is a lot weaker this time. I will post tonight after the op and let you […]

Off to theatre


Hi. Molly here again. Mel is now in ICU following 12hrs of surgery!! She is now fused all the way up and down her spine. She won’t be able to post for a couple of days, so please give her space and hope for a good recovery which the surgeon […]

Surgery