Thanks for taking the time to visit my JustGiving Page.

The reason we wanted to raise money for this fantastic charity is not only to raise more awareness about Ehlers Danlos Syndrome but also because it is very personal to us. 

My beautiful and extremely intelligent friend Emily Monk of Priorslee, Telford has the awful reality of living with the debilitating Ehlers Danlos Syndrome. 

EDS is a group of rare inherited disorders that affect the connective tissue. It can affect skin, tendons, bones, blood vessels, ligaments and internal organs.

There is a broad spectrum of severity. On one end you have celebrities including pop star Sia, actress Jameela Jamil and comedian Russell Kane who, in their public lives, appear to be able to still function strongly. But on the other end you have Emily.

As a young girl Emily was a talented gymnast before studying hard, getting work as a geotechnical engineer and having a happy marriage. It all started to be taken away from Emily when she was diagnosed at the age of 29. Emily is now 35 and struggles every single day with simple tasks that we all take for granted. Unfortunately there is no cure!

From the age of around 14 years, Emily started having problems with her digestion and keeping herself nourished. She suffered with other issues as well, with her shoulder, hips and veins. Doctors thought it was all separate but it turned out to be EDS.

Wendy (Emily's mum), Rachael, Jade, Natalie and myself are going to walk a marathon ion Saturday 26th June 2021 in order to raise much needed funds for this amazing charity. No one should be left to fight on their own. Every person with EDS should have access to appropriate medical services and care. This charity works to improve the quality of life for people living with EDS.

We are desperate for your help and support. Please donate anything you can, no matter how small. Every little helps! It is imperative this charity gets the funds they need to support people suffering every day with this condition just like Emily. It breaks our hearts to see what Emily has to go through. Please help support her and all the other people who are struggling with this awful condition.

Our marathon neEDS you!

Thank you for taking the time to read our story. Debbie x

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.