CCI

NOW SOLD OUT! Cramlington vue cinema are hosting a charitable screening of Disneys Beauty & the Beast 2017! On Monday the 27th March at 18:00, Tickets are £5/child and £7/adult, must be purchased IN ADVANCE FROM MELANIE HARTSHORN. Payment to be made via: ?bank transfer (“The Melanie’s Mission chariatble Trust […]
Beauty & the Beast Charity Screening at Cramlington Cinema

??#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 £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 ...

?Look out for my story online in the Chronicle on Saturday and printed in the Sunday Sun this week!? Dont forget you can buy our wristbands and ball tickets in our shop!! #melaniesMissionToLive #EDSAwareness #CCIAwareness

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 🙂 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 […]
#EllisMissionForMelanie

At another rheumatology appointment today. I’m tempted to buy a magicians set just so I can pull the magic wand out my sleeve at the next appointment when the Dr says “As you know, we don’t have a magic wand…” and I can say… “Well I DO!” haha.