My son Jacob was diagnosed with Leigh Syndrome when he was just 14 months old. As I sat at his bedside in intensive care, I googled ‘mitochondrial disease’ to try and find out more about his prognosis. Like many of our families, that’s how I first came across The Lily Foundation.
In April 2012, 501 days after he came into our lives, Jacob died peacefully in my arms. I’d never have got through those darkest days without the support The Lily Foundation offered. Liz introduced us to other people affected by mito and from that moment we were no longer alone. And now I’m incredibly proud to run for Lily and privileged to work for the charity. The way I see it, if I can’t look after Jacob any longer, I can look after other people in his memory.
Ever since I started running, the London Marathon’s been on my list. If I’m going to do it, what better reason than for Lily and Jacob and all the other families I’ve met on my journey. Plus, I said to myself I want to do it by the time I’m 50, and in fact I’m doing it the week after I turn 50. Now seems a good time and everything’s fallen into place.
I’m doing it with my friend Claire, who lost her daughter Lauren to mito just before her first birthday. Claire’s the reason I started running in the first place, and the reason I’ve got the running bug, which ironically she hasn’t! Back in 2015 there was a group of us who lost children at about the same time, and Claire came up with the idea of all us mums running the Vitality 10k together.
“At the time I didn’t run, I’d never run, and I hated running”
I’d rather miss a bus than run for it! For me fundraising had always been about looking after the logistics behind the scenes. I’d never been a sporty person; I was always picked last in PE at school, so my first thought was “No, I can’t run 10k”. And then I thought, “Why can’t I run 10k?” So we all decided to sign up, and called ourselves the Mighty Mito Mums.
It was the hardest and best thing I’d ever done. I was a completely different person back then. I was seven stone heavier and various things, including losing Jacob, had got me almost at rock bottom. And then working for Lily made me want to do something. Jacob had no choice in what happened to him, as is the case for all the families we support. I was lucky – I had a choice. I was blessed with a body that worked. And I was throwing it away.
That run was a massive challenge, but it was also a turning point. I started to look after myself better and lost a bit of weight, but I still wasn’t particularly active. I walked the dog but that was about it. I remember crying on the first day of training because the idea of running for a minute was horrific. But I did it and then I found that before you know it, you’re doing a bit more, and then all of a sudden you’re running for an hour!
Running that race with the girls was amazing – they literally dragged me across the finish line. I remember Liz telling me she was going to keep talking to me and making me run, and I might not like her for it but I’d feel better at the end. And I did. I remember crossing the finish line feeling more exhausted than I’ve ever felt in my life, but also feeling immensely proud. Proud of myself and proud of Jacob. He has this habit of making me feel proud, and he did it then. Achieving that made me realise I was stronger than I thought I was.
I don’t think anyone can understand the feeling until they’ve crossed that finish line and run further than they’ve ever run. It’s not about the time, it’s about crossing the line and challenging yourself. I know people say “If I can run, anyone can run” but actually in my case it’s true. Everything about me said ‘non-runner’. I started late and now running’s just become part of my life.
“What motivates me to run is a challenge”
I definitely need something to aim for. My marathon training plan started with a rest day on Christmas Day – perfect timing! But I’ve already upped my distance to 10 miles, and as an ‘older’ runner I want to work on my strength too, to give myself the best chance of not getting injured. I manage the fundraisers for Lily, so I know how many people get injured and have to pull out, and how gutted they are.
I’m running regularly, mixing it up, doing a bit of fartlek, a bit of interval training and some long, slow runs. I’ve never really enjoyed exercise but actually I’m enjoying it this time. Having a plan and having accountability really does help – I guess it goes back to that challenge thing, doesn’t it?
I don’t want to let anyone down. I don’t want to let Jacob down. And my little girl Charlotte’s so proud. She’s looking forward to cheering me on. That’ll be really special. And lots of people have said they’ll come and watch me too. I have to fit the training in and the one thing I’ve learned is that it’s easy to say you haven’t got time, but actually you can always make time.
Because it’s important. Besides the fact that I’m training for a marathon, I feel better for running. It makes me a nicer person. It makes me a better mum. So it’s important that I find the time, because what I don’t want to be is underprepared. I’m not looking to break any land speed record, so I’ll probably be out three days a week. Which I can do, absolutely.
I’m lucky that I’ve got Bob, my husband, behind me. I’ve got a running buddy Becky – she was also Jacob’s nurse. And I’ve got my friends and family. It’s pressure, but I know they’re all incredibly proud that I’ve agreed to do this, and that’s really important. No one’s laughed. No one’s said, “You’re doing what?” Everyone’s just said, “Wow, that’s amazing”. So I’m lucky that everybody believes in me. A little bit more than I believe in myself, to be honest.
And, of course, there’s Claire. The fact that she and I will cross the finish line holding hands thinking about Jacob and Lauren and the incredible difference those two little people have made, and continue to make, to the world. That’s motivation enough.
My advice if you’re considering signing up for an event? Just do it! Do it for you. Do it for your physical health. Do it for your mental health. Do it for all those families affected by mito. And believe in yourself because you can do it.
Just do it slowly. Decide what challenge you’re going to do, be it 5k, 10k, whatever. Find yourself a training plan, stick to it as much as you can and just enjoy it. Even if you’ve never run before and you decide you want to take on a half marathon, you will do it. It is possible – you just need to believe in yourself. Because if I can do it, anyone can do it.
Thanks for the encouragement Claire! If that’s inspired you to lose weight, get fit and have a great time in the process, why not sign up for a Lily event like Claire.
