So I'm running a marathon... but please read on. Soph and myself have kept the following in a small a circle until now but have decided to try and raise some money for a very personal cause.
My world was changed in March 2016 when I had a regular eye test which escalated into a diagnosis of x-linked choroideremia - a genetic form of retinitis pigmentosa.
This condition basically means that I currently have weakened peripheral vision, blind spots just off centre in both eyes, and extremely limited night vision. Over the next two (or three if I'm lucky) decades, these blind spots will continue to spread, join up, and result in total blindness - probably by the age of 60. This sucks. There is currently no treatment or cure for choroideremia but some promising gene therapy trials are undergoing - mostly in extremely advanced patients.
This diagnosis has caused some large difficulties in the past couple of years in my life and those closest to me. We see day-to-day complications of the disease. We have not told a great number of people about the situation as this is not a condition I want to define me.
However, the opportunity to run the London Marathon for the charity which supports research into the condition and supports those living with the condition is a reason to be open about my future functional quality of life. Retina UK are a fantastic charity who deserve a huge amount of support.
Rather than any sympathy (I don't do well with that), I would really appreciate donations to Retina UK through my JustGiving page and some shares on Facebook. The goal is to reach £2,500.
This will be my first marathon. I am currently out of shape and face a race against time to actually get around the course! The cause could not be closer to home. The only way a treatment or cure is going to be found is through funded research. If you're looking for a New Years good deed or were going to send me a message related to this post, please throw in a couple of pounds to get me moving towards my target! Any shares would also be fantastic.
Thank you =)