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!

Look who’s turned a corner! Feeling SO much better today now we’ve got on top of the other complications EDS & it’s friends throw into the mix! ? ☀️Sitting up, seizure free, smiling, pain controlled & able to sit in the grounds to feel the sun on my face- it’s […]

Almost 2 weeks Post op from 3rd life saving surgery

Hi, Just thought I’d update everyone on the plan! Not long left now, which I’m so grateful about as I’m suffering so much with all these seizures & symptoms. My skull is slipping because, the titanium screws at C1 are BROKEN inside the bone- this wasn’t apparent on earlier scans […]

Surgical plan