My wife 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.
I know you don’t want sympathy but tough luck, you’re getting it. I’m sorry to hear about your condition and I’ll be crossing my fingers that the gene therapy trials can succeed and give you hope for the future.
I can’t donate today, but I’ll look at doing it the next time I get paid.
Good luck with the marathon. As for your eyes; I know it's hard but there is plenty of reason to remain optimistic. Medical technology is progressing all the time and if the condition progresses as slowly as you say there's plenty of reason to hope there will be new treatments that can arrest the problem.
I just watched a documentary called 'Dealt' on Netflix which is about Richard Turner. He is a card magician who is not only one of the best in the world but he happens to also be blind. After losing his sight he also became a black belt in karate. It's a really inspiring film and guilted me into putting my excuses aside and going out for a run straight after it finished.
With the present rate of technological advancement, it may very well be possible that by the time the blindness takes hold, cures will have been found, through gene therapy, bionic enhancement, and so on. It's a grim condition but your odds of beating it have never been better.
That must be a shitty thing to find out but as someone with uncurable health problems myself I'd say the best thing to do is just take each day as it comes and try to live as full a life as possible - which by the sound of it is exactly what you're doing.
Hope you manage to raise a decent amount of money dude (I appear to have temporarily turned American), I'll bung a few quid your way in the next few days.
You guys are absolutely stand up blokes - It takes a huge amount of kindness to sponsor someone you've never actually met... I think I've messaged everyone individually but if I haven't, please do PM me to berate me.
If anyone else would read my post and be happy to throw literally a couple of quid at what is quite a huge cause to me, I'd be so grateful