These are real stories - mine and hopefully others from the Duchenne community too. Some funny, some difficult, most a bit of both. Tha kind of stuff that actually happens, when you're living with DMD, no t just the version that ends up in a leaflet.
The morning of the wedding, a surprise box from Candice, dogs in dickie bows, and nerves so bad I said "I do" before anyone asked the question. This is how the build-up to the biggest day of our lives actually went.
The ceremony was done, but the day was far from over. Photos on the promenade, a first dance we decided against for reasons I won't spoil, and an injury that ended the night earlier than planned. The real story of what happened after we said I do.
Back when I used a joystick to drive wheelchair, getting around parked cars meant hitting full speed across the road. One day that plan went unstuck when a van door swung open exactly the wrong moment. A short story about independence, bad timing, and added yet another injury to the list.
We rescued Patch not really knowing what we were getting into - turns out he came with quite the allergy list. Then I said no to a second dog, had a dream, and changing my mind, Luca arrived cute as anything and immediately sank his razor blade teeth into my ear. He's calmed down since. Mostly.
Got a story you'd like to share? Funny, difficult, or somewhere in between - all of it welcome here. Whether you're with DMD, another form of muscular dystrophy, a family member, or a carer, you're voice matters and your experience could mean a lot to someone else reading it.
Andrew is a writer, alt film poster designer, and lifelong Manchester United fan from Lancashire, living with Ullrich Congenital Muscular Dystrophy. Here's his story, in his own words.
Who I am?
Hi, my name is Andrew. I'm a writer and Alternative film poster disgner from Lancashire and, thanks to Mr Ulrich's marvellous syndrome, also rather disabled. Very disabled. Some might say extravagantly disabled.
So, what is Ullrich syndrome?
Well, Ullrich syndrome is slightly different to Duchenne but I think it's all under the same family blanket of Muscular Dystrophy, so that's all. It basically means that my collagen gene won't play ball, in fact won't even get it's P.E kit on, creating a whole host of problems with my body's team dynamics and season form. This means that, ultimately, I can't walk. I have basically half a lung and a spine like a corkscrew, My muscles are very weak and continue to weaken. I use an electric wheelchair full-time and a BiPap ventilator machine at night to help me breathe. So with that, coupled with various other bits and bobs, and you can't say i haven't got my money's worth with the whole disability thing!
What the hell amd I doing with my life?
Well, I'm a writer primarily. I have short stories and poetry dotted about the place in various literary magazines and websites. I guess my main achievment though is my debut novel, "Green laughing", being published by the wonderful people at Northdox Press. It's been about two people, from very different walks of life,who are trapped on a spaceship in the middle of nowhere. It's a slow burn portrayal of how different people cope with challenging situations when all hope is lost, and how beauty and happiness can still find itself within that hopelessness.
When I'm not writing (and by"writing" I mean pretending to write whilst actually doom scrolling online), I also create alternative film posters. The cinema has always been a special place in my eyes. It's a fantastic accessible day out that doesn't take up "that" much energy for me. This, coupled with the fact i've always loved art and design in general, means my alt posters are the result. It's just for fun, really. As they're not licensed, I can't use any copyrighted images. It can be quite a challenge to think of interesting ways to portray the film without using the shots from the film itself. Although, I actually think this forces more creativity and sometimes produces better results. Limitation is the mother of creation, as they say.
How else do I fill the void?
In terms of hobbies, other than film and artsy stuff, my major passion is football. I've been a manchester united fan since conception. In fact, on the day of my birth "Come on You Reds" was number one the in the UK charts! So it that wasn't destined to be, I dont know what is.
I also collect pin badges and brooches. I'm not sure why. Maybe it's the appreciation of craft, ebing able to fit design into such a small area. Or maybe it's just bevause I like small shiny things.
What else is there left to say?
When Kyle asked me to share my story I was initially hesitant. I've always been a shy person and talking about all things to do with myself doesn't really come naturally. I'd much rather write about fictional characters than the disabled ginger guy in the mirror. However, I think Kyle's idea to create a website that spreads awareness about disability is a great thing, and necessary. It can be a good resource for disabled people and also non-disabled people who want to lear. So I thought it was only right that I open up and share what I have to share.
Shameless plug, you say?
Thank you for taking the time to read nonsense and ramblings. If you've made it this far and wanted to buy my debut novel you can find it here:
http://www.northodox.co.uk/product-page/green-laughing-paperback
If you fancied following me, here are my socials!
Instagram: @CropOnATrip
BlueSky: @criponatrip.bsky.social
Cheers for reading!
