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Facebook: Help Lottie get Skull and Spine surgery not available in the UK Click
Instagram: Helplottieupright
Tiktok: Video updates click here
Hi, I’m Lottie. I have Ehlers Danlos Syndrome (a connective tissue disorder) and I probably make my local medical practice cry when my name comes up on e-consult. I would describe myself as a part-time contortionist (unwillingly), and full-time owner of a head that’s trying very hard to make a break for freedom.
I have been diagnosed with two conditions called Craniocervical & Atlantoaxial Instability and Occult Tethered Spinal Cord you can click the links for detailed information on each condition. I've also acquired vein compression from C1 Shifting out of alignment due to lax connective tissue holding it in place.
My dad has kindly given me his pension he worked so hard for, because of him I have the money to pay for the surgery itself. But not enough for the after care once I am discharged from hospital after 10 days.
I need to raise money for
- My stay in Spain at MICs Sant Jordi after I am discharged from hospital
- Missing wages for Mum, Tyler and I
- Flights
- Food, Medication and other basic essentials
Below is an illustrated image of the type of hardware that will be placed into my neck and skull.
Every single share, donation, and kind word helps get me one step closer to getting the life changing treatment I need.
Thank you for helping me keep my head, literally and figuratively





