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03/05/2019

Am I bugging people?

By Andy Stevenson. Last weekend I ran the London Marathon. It’s been twenty years since I last ran it, at a time when I’d never heard the words ‘Rett Syndrome.’ It would still be another four years before my life changed forever.

My daughter, Beth was diagnosed with Rett Syndrome in 2003. I can’t remember the exact day or even the month. I felt the same emotions as any parent who had just had such a devastating diagnosis for their only child. I felt totally helpless and lost. There was nothing happening in the way of research and it seemed that Beth had received a life sentence.

Loving and looking after Beth and giving her the best life possible despite the heartbreak, wasn’t enough for me, I needed to do more. I began taking on challenges to make myself feel better. As the money I raised wasn’t going to Rett research it was difficult to remain motivated. That all changed with the reversal experiments in Edinburgh in 2007 when Rett Syndrome was proved to be reversible.

I threw myself into more crazy challenges but still there seemed to be no concentrated way to fund research.  After this amazing breakthrough, I was getting desperate and ready to throw away my trainers for good.

Fortunately, around this time, the US based Rett Syndrome Research Trust was formed. I began fundraising for them. They were driving cutting edge Rett research and were changing the landscape for people living with Rett Syndrome. They were giving all of us hope for the future, a Rett free future.

It wasn’t long before I joined forces with other parents in the UK who felt the same as I did. Rett Syndrome Research Trust UK (which became Reverse Rett) was formed in July 2010 and we’ve been working ever since in partnership with RSRT to keep driving the science forward.

I am often contacted by other parents, especially dads, asking for advice on how to keep on fundraising year on year like I do. I can’t lie or dress it up, fundraising is hard. We live in a time when everyone has a cause personal to them and we are all hit with fundraising pages every time we venture on to social media. There isn’t an easy answer but here’s some of the things I’ve done and continue to do to try to gain support from family, friends and even the wider public:

Lay yourself bare: Doing this on social media is difficult, especially when you don’t know who’s going to see it pop up in their news feeds. In the early days I made every post positive, only using pictures of Beth smiling and never mentioning that it took twenty goes and usually singing and dancing to get that one smiley photo. I used to tell people who asked that she was happy and had a ‘mild’ version of Rett. As she’s got older I’ve discovered there’s no such thing. (All people with Rett, whatever their ability level, have different challenges to deal with.)

Talk about the symptoms of Rett and the daily struggles of living with the condition:  In my posts I have talked about not only how it affects my my girls (I also have a stepdaughter, Amber) but also their siblings. I talk about my feelings and how this sort of diagnosis can affect your mental health etc. Make it as personal as possible and speak from the heart. There is no hiding place if you want people to take action.

Let as many people as possible how fast Rett research is progressing. Clinical trials to treat symptoms are happening right now, a gene therapy trial for a cure is imminent. No one knows if this will be the answer but it’ll be exciting finding out.  When you’ve lived through having no kind of treatments or cure on the horizon, to now have this tangible hope is simply amazing. Point out that this is something that most neurological disorders don’t have. If you can persuade people to read, watch or hear about Rett research and see how close something so life changing actually is, they won’t be able to help but ride on your wave of optimism.

Ditch the doubts:  ‘Am I bugging people?’ ‘Are they sick of hearing about Rett?’ These questions often invade my thoughts. At times like these I go and spend five minutes with one of my girls and am reinvigorated.

I’ve learnt to live with Rett Syndrome but I’m sure they haven’t. They are 23 and 19 and can’t do most of the things that healthy girls and women their age can do. They have no independence and worst of all, will never (as things stand) experience the kind of love (romantic/outside family) that most people take for granted.

When the people you know, hear this kind of emotion expressed on such a personal level, many will want to help, whether that’s by donating, taking on a fundraising challenge themselves or simply by sharing your posts. It all helps spread the word about Rett Syndrome and the dedicated work of the scientists we fund.

I’m lucky, I have some amazing friends.  I’m sure you do too. Some have been supporting me in my challenges for sixteen years now and they understand that my urgency remains. Others have turned their back for whatever reason and that’s fine too.

Keep focusing on the people who do whatever they can and don’t take it personally when people don’t support. It’s probably nothing to do with you, or how you have fundraised. Everyone has their own life, challenges and personal causes. You have to stay focused on the positive.

While there’s nothing positive about Rett Syndrome, I want the people who have supported me over the years to know just what a difference their support has made to my life.

It’s like running the London Marathon with a whole field of people behind me, cheering me on but not just cheering me on, running alongside me.

Keep going. We’re nearly there.