Fundraiser of the Month – January 2018

My father in law recently lost a very brave battle with cancer. He raised money for charity all throughout his life including abseiling from the forth rail bridge only months after a stroke. He was a civil engineer in Edinburgh and had a great interest in the new bridge, but unfortunately never got to see the final product. In his final few days I spent a lot of time with him and his sons and realised how generous he could be, along with how much his work meant to him. His story has inspired me to do my first ever fundraising for a cause very close to my heart whilst also remembering Hugh and his interest in this amazing project.

I have Ehlers Danlos Syndrome and because of it every day is a struggle. There are days the pain is unbareable and knowing the medical community know so little about it is isolating and very frightening. There is no cure for this syndrome, no magic pill to control the problem, no specialist to see at the hospital and little to no awareness in the general community. The best we can do is hope for a caring doctor and to manage our symptoms to the best of our ability. With funds for research, treatment and support many people in the U.K. could live a more comfortable life. We could prevent increased damage to our joints and organs by diagnosis at an earlier age, but that can only come with awareness in the medical community and support to sufferers and their families. The medical equipment required by some sufferers is immense and with this comes a cost. This is often self funded due to the lack of awareness and understanding of the condition.

I myself have subluxed or dislocated several joints thanks to this condition. I have oseteoarthritis in my hips and lower spine as a result of the pressure put on these joints thanks to my unstable ankles, feet and knees. There are days I can barely walk so doing this 1.7 mile walk is a big deal to me. It seems such a small distance but to achieve it I will be wearing specialist compression leggings, supportive footwear, possibly having to wear ankle supports, knee supports and a back support along with a walking stick or crutches. That is if I haven’t subluxed or dislocated a joint in the time before the walk. I may be able to do it with minimal supports, but part of this condition is not knowing the severity of the pain until you are in the situation.

 

Victoria raised an incredible £525

Thank you!

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