Several of my family members have Charcot-Marie Tooth (CMT) and have had to alter their life goals due to their disability. I’ve often thought how easily it could have been me, and how my life today would be unrecognisable. I’ve always been such an active person, and my musical theatre career has been some of the best years of my life.
I used to feel guilty about the life I’m able to lead, but now I just try to be thankful.
From watching to signing up
My partner ran the London Marathon last year in memory of his dad. Watching him go through the ups and downs of training really inspired me. The whole day was pretty special. The support from the crowds and atmosphere was electric. So, when the applications came round this year, I decided to enter.
I’m not much of a runner. My little claim to fame is that I was the fastest 12-year-old 100 metre runner in the Northwest. I used to be speedy, but when it came to doing long distance races in school, I would pretend I had asthma to get out of them.
To motivate me I knew I’d have to run for a charity close to my heart, so I secretly signed up to run for Muscular Dystrophy UK. Part of me was hoping I wouldn’t get selected, at least then I could say I’d tried. Of course, that meant I received a phone call within three days confirming I had a place. I doubted whether I could cope physically and mentally. But I wanted to challenge myself and raise awareness of Charcot-Marie Tooth.
Charcot-Marie Tooth runs in my family
As a child, I just knew my dad ‘walked funny’, but I’d never known any different.
It wasn’t until years later that I saw the debilitating effects of the condition, and learnt that, in another life, that could have been me.
My dad is now 79-years-old and it’s hard to see how much of a struggle daily tasks are for him.
My two nephews also have CMT. They struggle with dexterity due to loss of sensation in their fingers. They also experience lower back problems. Because of this, my oldest nephew, who is 24-years-old, has had to accept that his dream of being a chef in a fast-paced restaurant isn’t possible.
I’m so proud of them both for adapting and pushing through despite these challenges. Ellis is training to be a pastry chef in a slower paced environment. My younger nephew, Harvey, has two children and is an amazing dad.
Training for the big day
I’ve always been an active person. I started dance classes from six-years-old and ended up doing a musical theatre degree in London.
From there I starred in West End shows, such as Everybody’s Talking about Jamie and Heathers. I also toured with several productions, including West Side Story. But performing choreography on stage is pretty different to running a marathon, so I started training in May last year.
To start with, I struggled just doing five kilometres at my local park run. I had to work my way up slowly and find what works for me. I’ve watched lots of YouTube videos about how to train for marathons, as well as getting tips from some friends who are long distance runners. Finding music that allows me to keep a good pace has really helped, which has turned out to be African tribal house music – who knew!
I did my longest run last month which was 25km. My body was in so much pain and by the 22km mark, I was just putting one foot in front of the other. When I got home, I saw that I’d passed the £2000 donations mark which was a great moment after such a gruelling run.
I’m very nervous about doing the marathon. But I’m also really looking forward to the crowds. I think it’ll be a huge adrenaline boost. I’ve been doing most of my training on my own, so it’s been quite a lonely experience. Running with so many people on the day, who all have their individual motivations for taking on the challenge, will be so special.