Tom Stafford is father to Polly, seven and Evie, 10. He is also Deputy Sales Manager of Softcat. Polly has TSC and here Tom explains why he does what he does for the TSA.
When you have a kid that you can't fix – the helplessness of me not being able to fix my daughter Polly – that's what drives me to do what I do, Polly is now seven and a half and for the past five years I have done something every year – including running, Ride London to Surrey bike ride - to fundraise for the TSA. It's a little like the philosophy behind the film 'Pay It Forward' - you do some good because you hope that what goes around, comes around. You hope that the money you raise will slowly but surely help Polly to have a better life.
I'd even go so far as to say that it's almost for the sake of my own sanity that I fundraise because I'm almost superstitious that if I don't, then something bad will happen.
When Polly was diagnosed with TSC I think I was in shock for a year. Some doctors just don't seem to get just how important this is to you – some clearly go above and beyond, but to some you can't help but get the feeling that you are just a number. And that's no good for me. I'm someone who does a lot of reading up and research. I query and question things.
My wife, Leanne, is very calm. She just gets on with trying to keep everything as normal as possible and giving us all the best life we can have. And Evie, Polly's big sister, is amazing as she's taken on more responsibility than a lot of children towards her little sister. There's no doubt that adversity does give you a bit of perspective. And she's now facing her own issues – she's 10 and she's just been diagnosed with juvenile arthritis which was totally unexpected. And then I'm the horrible one who makes the noise, advocates for Polly, challenges decisions and does the fundraising.
I have been massively helped by my employer, . I am one of their Deputy Sales managers and I have worked for for 17 years. The firm had 50 staff when I started. Now it has more than 1,000, but is still very focussed on doing the right thing, being a good place to work, and on being a company which really engages with people, especially it's employees.
When I ask for my colleagues' help with fundraising I don't anything. I try to appeal to people's better nature. And I am completely open and honest about the situation. What's it's like for Polly to have TSC and the challenges we face as a family. I can talk about things that are private – because that is what really makes an impression on people.
I am also very lucky because I have the support of people at the top too. Martin , our current Chairman, is very much into anything of a charitable nature. His son is autistic so he does a lot for charity himself – and he gets it. When you have people at the top of your organisation advocating for you then people will listen. And is an engaging company. This fosters the sense of it being a good place to work and even though it is now a very big firm there are a lot of people there who are really good friends with each other, and I have a lot of friends there. So when I tell them about what's going on with Polly, and then I ask them for help with fundraising – or like last year with the #Fight4Treatment campaign to secure for inoperable SEGA (brain tumours) - then they really get it and are very willing to help.
have always been brilliant to me. I never wanted people to think I was taking the mickey so I've always told them everything that's going on so when I've needed to ask for time off for hospital appointments etc they would support us. And when you have that, it's a big comfort.
I think my best moment so far was last year when it was brilliant to see that was finally Ok'd by NHS England to treat people with inoperable SEGA. It felt like all our efforts had been vindicated – we'd come up with a result. Again, it's that Pay It Forward philosophy in action.
At the time Polly didn't need but I still wanted to support the campaign because I felt very much that it was the right thing to do.
I wanted to make sure that it happened. Which is why we got so many people from writing to their MPs and supporting the TSA's #Fight4Treatment campaign. And, then, just a month after it was OK'd we were told that Polly had a brain tumour which was growing and which was inoperable. And she's now been on for six months and we have been told that her tumour has shrunk by half. So all the work that people are doing has resulted in something that's given her a chance. But without all that campaigning we might be sitting here – after having been told that her tumour is inoperable – knowing there was a treatment out there which could potentially help her but one which she could not access because of NHS red tape. It's all kind of come around for us.
So I would say to anyone who is considering corporate fundraising, or getting your company involved with campaigning: talk to people at the top first. Get them onside. Make yourself visible. Be open. And get your business to support you.
In total Tom Stafford with support from his employer, , has raised more than £38,500 for the TSA in the past 5 years.