£700,000 and counting … The Salisbury Fund’s mission to save sight and change lives

You’ve talked about this a lot, but how did it feel the day Tommy, your son, received his diagnosis?

Since my grandad and my cousin both had Choroideremia, which causes progressive loss of vision, I knew a bit about it. In one way, that made it worse because I knew what was coming. I knew that Tommy would eventually lose his sight. But on the other hand, I didn’t have to find out about it. Above all else, I knew that time was the most important thing we had on our side. I thought, ‘This will gradually get worse for Tommy. I haven’t got time to sit around.’

You were fundraising within six months of the diagnosis. What do you put that drive down to?

I think I needed something to put my mind into. Tommy got his diagnosis in February 2004, and by September me, my mum, cousin, auntie and best friend did the 5k Hydro Active Women’s Run in Hyde Park. That was our first, and we raised around £8,000.

We’d already gone through a lot of trauma in my family by then; my brother died when he was 17, so I guess I might have picked myself up quicker than someone else might have. Or I’m just that type of person; action makes me feel better. That and talking. In my family, we’re big believers that talking heals you better than keeping everything inside. So, if I ever had a low day – and I did - I’d know I needed to speak to someone, and I’m lucky to have a close family. I have people I can call and unload a bit. Bottling it up wasn’t ever going to help me.

You’ve embraced that openness when it comes to Tommy’s condition, too. How has that worked for your family?

We’ve been honest and open with Tommy right from the off. It was Andrew Webster at Moorfields who diagnosed him. He told us before we told Tommy. I cried, my mum cried, it was terrible, of course it was. But I pulled myself together for Tommy, I explained it to him by saying, “Your eyes won’t work as well when you’re older,” and that was just how it was for him from age four. Of course, the questions came as and when he was ready to ask them, and it was our job to be ready with answers that were honest without being too scary.

What was it like for Tommy to come to terms with the condition? 

I’ll never forget when he was eight, he came down from his bedroom and said, “Mum, will I go blind one day?” it was really hard. I can’t tell you how hard. We’d always been so careful about the label of ‘blind’ in all the articles and interviews we’ve ever done, always saying ‘total loss of vision’ instead. But that night, I was able to say, “You might, but that’s what we’re working so hard for.” Because I’ve always made sure Tommy knows about the research that’s being done on Choroideremia.

We’re open in that way too. Outside our family, I wanted Tommy to be known by people in the world of Choroideremia, the researchers and the experts. I wanted them to meet him, and for him to meet them, so he knew we were tackling it head on and they could picture the people they’re working to help.

The Tommy Salisbury Choroideremia Fund has run countless events to raise money. Are there any moments that stand out?

We live where we’ve grown up, so we have a whole community who know us and Tommy’s Fund. We’ve done everything: golf days, coffee mornings, runs, walks and bike rides, you name it. But over the last 20 years, the moment that really sticks out is a call I got on the way to a medical health check in September 2011. I remember exactly where I was, in a waiting room near Paddington. The first operation had taken place that was part of a clinical trial we’d helped fund, and the call told me it had gone according to plan.

The trial was being run by Professor Robert Maclaren of the University of Oxford. At the time, he said it would not have been possible without the scientific funding provided by Fight for Sight through The Tommy Salisbury Choroideremia Fund. He also added that no one should ever underestimate the power of determined individuals in influencing the course of research through their fundraising. That meant a lot!

That’s not the only recognition you’ve had for your efforts. You were Tesco Mum of the Year in 2015, you won a Heroes Award from The South London Press, while Tommy won an award for bravery, and you even got to carry the Olympic torch in 2012. How does it feel for your work to be acknowledged the way it has?

It’s all about the publicity, really, and one thing led to another with us. Newspapers, magazines, being on GMTV all served the purpose of raising awareness and helping other families living through the same challenges as us to feel less isolated or lonely. But above and beyond all that, my main goal is Tommy. It always has been. He’s in a much better place today because of what we’ve done and the incredible support we’ve received.

So, what’s next? 

We’re still as enthusiastic today as we were when we started. And now Tommy is older. He’s not just cheering me on at events, he’s doing them himself. Last year Team Tommy, which is him and 15 others, ran the London Landmarks Half Marathon, and then Tommy and six other members of Team Tommy will be running in the London Marathon a few weeks later. He can’t wait, and I couldn’t be prouder of him.