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02/08/2019

A man called Ray

By Andy Stevenson

I hadn’t played Golf for 6 years until last week, I hadn’t planned on ever playing again after a lifetime of playing, practising, coaching and selling Mars Bars in golf shops. To get me back on a golf course was going to take something special and that something was a man called Ray.

I met Ray many years ago when he came to me for a Golf lesson, he had one goal, to break 100. He did that very quickly which had more to do with his determination than my coaching and he was soon shooting in the eighties regularly.

After Reverse Rett was launched Ray decided he wanted to help Rett research in honour of my daughter, Beth. He was working for Barclays and he organised a Golf Day for his colleagues at Mersey Valley Golf & Country Club where I worked for 15 years. The event was a great success, everybody enjoyed themselves, I gave a speech (and cried) and a good chunk of money was raised (some of it because I cried).

The following year I left Mersey Valley and began working for Reverse Rett, it was a big decision for me but one I’ve never regretted. Ray could be forgiven for forgetting about Beth and Reverse Rett, let’s face it everybody has been touched by something in their lifetime and have a personal cause they support. He also didn’t have me in the Pro Shop with my ’12 months of the year’ sponsor form on the counter.

Ray didn’t forget and in Spring each year I’d get an email telling me the date of his next day Golf day and an invite to play. For various reasons I didn’t make it back to play till this year. Something always threw a spanner in the works and if the truth be told I had no desire to make a fool of myself playing golf again.

Last week I finally made it back onto the Golf course and played with Ray, his son, Philip and long-time friend and Reverse Rett ambassador, Rugby League player, Gareth O’Brien. I was nervous for a week before but with borrowed clubs and no golf shoes we managed to win! It didn’t matter one bit that most of the other people playing only played once a year in Ray’s day.

People like Ray are rare. We need more Ray’s to cure Rett Syndrome. People with the tenacity to keep on going, keep on asking and keep on doing. I saw a stat recently in a blog post from Tim Freeman who also has a daughter with Rett Syndrome and works for Rett Syndrome Research Trust in the States. Despite the immense promise of Rett research, families that fundraise for it are the exception, not the rule. The 600 families that fundraise for RSRT represent about 4% of all the Rett families in the US. Worldwide, far less than 1% of affected families are fundraising for RSRT.

I know as well as anyone how hard it is to fundraise at the same time as living with Rett Syndrome but if families aren’t able to help fund research why should anyone else care enough to do it? We see our children struggling on a daily basis, that alone should give us the impetus to ‘do something, anything’ to bring about a change in their circumstances.

Ray has never met Beth or anyone living with Rett Syndrome yet he does what he can to help. Next year is the 10th Barclay’s Golf day at Mersey Valley and I’m already excited about defending the trophy but even more excited about spending 9 holes with Ray, a man who inspires me and helps me keep going. He is by no means the only one, for years old friends have popped up wanting to help and contribute to our cause. Last week, the Captain at Mersey Valley, John O’Connell handed me a cheque for £2100 from 6 months of fundraising. I don’t ever expect this level of support and I’m amazed every time it happens especially when it comes from members of Mersey Valley who had a torrid time from me when I was in the shop every weekend. The Directors at Mersey Valley have always supported me and Reverse Rett and even though it’s under new management still support Ray’s Golf Day each year.

I know of many parents of children with Rett Syndrome who have had similar support and I know they feel the same as I do, humbled that they want to help my child have a better life.

For any Ray’s out there, whoever it is you know with Rett Syndrome please get in touch and be part of a cure. We need you!