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Date: 09 Feb 2010 14:50:11
Title: Fw: James Downie

A serious one from me today…………….

 

I met James at Woking 6th Form College. At the time, our parents lived a couple of streets apart a few miles away from College. As James tells everyone he only made friends with me because I’d passed my driving test early and could give him a lift to and from College! Always a good laugh, always fun to be around, James and I had some great times over those 2 years, James was very active, very sporty and although he talks a good game of football he was never quite as good as his talk! We then drifted off to University.

 

Whilst studying at Brighton University James underwent a series of tests because of various physical problems. I recall it took numerous appointments and several specialist consultants to confirm that James had Ataxia. James was mid twenties and was told he had an incurable, degenerative disease that affects approximately 10,000 people in the UK. Ataxia means “absence of order” and it affects balance and coordination and Ataxia UK is the charity trying to find a cure for the illness. It is often said that someone who has Ataxia maybe mistaken for being drunk. Over the last 5 years James was walking unaided, then he had to use crutches and now he is confined to a wheel chair. His speech and coordination have also deteriorated and sadly unless a cure can be found he conditions are only going to worsen.

 

Publically, how James deals with Ataxia is inspirational. I’ve never heard him complain, never heard him moan, never seen him upset and he still has his great sense of humour. I’m sure there are times behind closed doors where he does break down – I’d imagine the vast majority of us would. However, rather than feeling sorry for himself, James set up a website design company with a friend and is also the chairman of his local Ataxia group which subsequently lead to him becoming a Trustee on the Board of Ataxia UK. If I was told in my twenties that I had Ataxia and how it would affect me I’m not sure I would be so strong.  

 

Over the last couple of years I have previously raised money for Ataxia UK. Initially, there was the overnight London to Paris cycle which was organised by James’ family. It was a fantastic cycle that Dad and I did on our tandem. Last year was the London Marathon and I ran one of the 6 Ataxia UK charity places. When Rich confirmed that I was his new rowing partner and we then started the endless planning meetings the question of which charity do we want to raise money for was raised?  I wanted to raise money for Ataxia UK and I was aware that Rich had no personal connection to the charity and said that he should select a charity of his own. The downside of having 2 charities is that the money we’d raise would be split between the 2 of them – however I’m sure a charity would see any income as better than none.

 

We needed to get a Rowing website up and running to help launch our fundraising campaign. As James is a talented website designer I set up a get together for Rich, James and I. Rich came away after the feast at GBK and said James had made such an impression on him that we’d only raise money for Ataxia UK. James kindly agreed to design and update our website and has done an amazing job ever since. I’m sure if we were paying customers he would have told us where to go months ago after all the changes and tweaks that we constantly ask him to make! James also designs our e-newsletter and these have been a great asset to the campaign too. I am so pleased that James has been so heavily involved with the rowing project - he comes to lots of our meetings and always has great ideas to share.

 

Spending time with James in his wheelchair attending various football matches and music events has really opened my eyes to living with a disability. Although, the up side is we always get to park right out the front of the venue and get in quicker!

 

In summary;

  1. James is a top bloke and inspires me. Good on you mate.  
  2. Thank you to all of you who have helped support Rich, James and I and Ataxia UK.
  3. I hope I can continue to raise money for Ataxia UK in future events.

The row must go on – Antigua here we come.

 

Barnesy


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