??#PurpleZebraBall?? As you are aware we are having a fantastic #PurpleZebraBall to raise funds for #MelaniesMissionToLive for her life saving surgery that is desperately needed ASAP! The ball is to be held at #KingstonPark on February the 25th 2016! We NEED a minimum deposit of Ā£10pp by Monday (the 6th […]

Ball Deadline & Update!

  I couldn’t live with Ehlers Danlos Syndrome and Cranio- Cervical Instability without: 1. My iPhone My iPhone is my lifeline, I use it 24/7, literally have it strapped to my arm with a seizure detection App Siezalarm on it. This detects the movements when I’m fitting and calls my […]

15 things I couldn’t live without, with Ehlers Danlos Syndrome ...

This 5 year old sweetheart Elli, who also has Ehlers- Danlos Syndrome (EDS) is making these beautiful bracelets to build awareness of EDS and CCI šŸ™‚ All monies raised will be donated to Melanie’s Mission to live, and will go towards helping “aunty Mel” Mel (Melanie Hartshorn)get to the US […]