Kiera Santry, who lives with a rare form of limb girdle muscular dystrophy, never dreamt it would be possible to take part in the London Marathon. Now, alongside her husband, dad, sister and her sister’s partner, she hopes to raise £10,000 by taking part in the iconic event.
‘Making my dream a reality’: Taking part in my first London Marathon thanks to specialist wheelchair
Kiera, who heads up our Challenge Events and Community Fundraising team, shares her journey and explains what this opportunity means to her.
My condition is so rare they’ve not been able to fully diagnose my type yet. It affects every aspect of my life. Before my diagnosis, I was that child who never sat still and always had far too much energy. Obsessed with gymnastics and any sport that involved a ball and blissfully unaware of what my future would hold.
My diagnosis journey
When I was nine, my trampolining coach noticed I had trouble bearing weight on my arms. My parents witnessed I was struggling to do things I’d usually do with ease. I’d often trip or fall. We visited our GP, who brushed it off saying ‘she’s just a bit clumsy, there’s nothing to worry about’. As I continued to struggle, my parents knew deep down that something wasn’t right.
I’ll always remember the day we received my diagnosis of limb girdle muscular dystrophy. The doctor looked me dead in the eye and said “I’ll be honest with you Kiera… It’s shit.” I didn’t understand the condition or what this would mean for me. You think you’ll be given some medicine, and everything will be fine.
Two standout moments for me were the look on my parents’ faces, after they were told that their eldest daughter would continue to get weaker, have a lower quality of life, and a shortened life expectancy. Our world as we knew it was crumbling around us, and there was nothing they could do or say to make it all okay.
The other was finding it amusing that the doctor had just sworn. His bluntness stays with me even to this day. It reminds me that I can’t change my situation and just need to get on with it.
Resenting my condition
My condition progressed rapidly between the ages of 12-16. As well as dealing with the usual teenager pressures, things became more difficult. With all the falls, broken bones, cuts and bruises, it became apparent that I needed to use a wheelchair.
The thought of being someone who needed a wheelchair never really sat comfortably with me. I didn’t want anyone seeing me in my chair – perhaps it was due to the way society portrayed disability when I was growing up – or the thought of being different.
By the time I was 16, I couldn’t bring myself to go out. I didn’t feel like me anymore and I’d lost my love for life. It was the darkest period of my life but then something in me changed…
Living a fulfilling life – just a little differently
Thanks to the support of my family and close friends, I realised that I was the one holding myself back, not my condition. My mindset was changing, and I knew that using a chair could only enable me to do and experience more.
When I got my mobility scooter, it meant I could do little things for myself again, like pop to the shops when I wanted, meet up with friends on my own, and I could feel myself starting to live. I began working at Muscular Dystrophy UK, met and married the love of my life, and I’m lucky to have such an incredibly supportive network of friends and family who support me.
I can’t pretend that everything is always sunshine and rainbows, because it’s not. Muscular dystrophy is a daily battle and has stripped me of a lot of my independence.
However, with the right support, the right adaptations and the right people around me, I’m able to live an incredibly fulfilling life – just a little differently… and I’m okay with that.
I’m now proud to say I’ve reached a point where I’ve finally accepted my situation and embrace life. I try to make the most of every moment and opportunity that comes my way. Taking part in this year’s TCS London Marathon is me doing exactly that and I can’t wait!
The Big Day
If you’d have told me 10 years ago that I’d have the chance to take part in the London Marathon, I would have never believed you. After years of working closely with so many incredible MDUK supporters and cheering on my own family and friends who have taken on the marathon, it honestly feels like a dream come true. I’m really proud that we at MDUK have made this a possibility for our community and I can’t wait to participate alongside our 100+ Team MDUK runners!
Muscular Dystrophy UK has been there every step of the way for me and my family, from my diagnosis right up until now. And this experience simply wouldn’t be possible without the specialised running wheelchair they provided. I couldn’t think of a more worthwhile charity to raise money for.
Our race wheelchairs
We’d like to say a special thank you to an anonymous donor for funding our specialist running wheelchairs and to Delichon Ltd for working with us to supply them. These wheelchairs enable Team MDUK race participants, like Kiera, to take part in and experience events like the London Marathon.
Support 'Kiera and her Chauffeurs'
By supporting the team’s efforts, you’ll be contributing to research and support for people like Kiera living with a muscle wasting condition.
Interested in using one of our race wheelchairs?
If you’re living with a muscle wasting condition and are interested in using one of our race wheelchairs for an upcoming fundraising event, contact us to find out more.
