I would like to tell you about my granddaughter Evie (pictured on the right). Last November she was diagnosed with Vascular Ehlers Danlos Syndrome (VEDS), is a life-threatening connective tissue disorder that affects all tissues, arteries and internal organs, making them extremely fragile.

This can cause rupture to major organs and arteries with no warning. VEDS is very rare; approximately 740 people have it in the UK. It can be hereditary, but in Evie’s case it has come out of nowhere. Evie is now six years old and she has most of the features of VEDS including bruising easily and hyper mobility, causing her fatigue.

When out walking Evie is awfully slow, partly because her legs hurt but partly because she is picking up every snail, woodlouse or twig. She enjoys anything to do with bugs, nature and art and she has kept me supplied with rainbow pictures for my window!

Evie has a sister Olivia, age 5, (pictured on the left) and it is difficult to not let them do normal childhood things together. Evie can’t go on a trampoline, bouncy castle, do contact sports or blow instruments. Olivia will dive into anything, but Evie does seem to have a natural reserve. Evie’s parents first instinct was to wrap her in cotton wool, but they are trying to give her as normal a life as possible. 

My daughter found Annabelle’s Challenge, a charity started by parents of a child (Annabelle) with VEDS. They have offered a lot of information and support, and they also raise funds for medical research. The third Friday of May each year is Red for VEDS Day when they ask people to wear red, take a photo and post pictures tagged with #REDS4VEDS to raise the profile of this rare condition. This year I got out my Christmas projector and lit up my house red.

     
More information can be found at www.reds4veds.org or https://www.annabelleschallenge.org/                                                                                            
Thank you for reading

Christine

Support Worker, Ely