Erika is 23 years old and lives with congenital muscular dystrophy. She’s recently written an autobiography about her life growing up with the condition. Erika shares why she wanted to publish a book, what she hopes people get of it and how creativity is an important part of her life.
It's normal to be different: rolling through life with muscular dystrophy
Creativity looks a little different for me. Although I have very limited arm movement, I run a small art business where I paint watercolours. My carers move my arms and the paper into specific positions, and my family helps me turn my artwork into cards and prints. Creativity has always been part of my life, but writing my book was much more personal.
The purpose of my book
The idea came about last year during a conversation with my mum and dad over dinner. We were talking about when I was first diagnosed with congenital muscular dystrophy, and how at the time, they had no idea what it was or how to deal with it. I realised that so many parents and families are in that same position of feeling frightened, overwhelmed and unsure of what the future might hold. I wanted to write something that showed disability doesn’t ruin your life or put it on hold. There are ways around things, and there is still so much life to live.
Writing the book gave me space to reflect on what I’ve been through and what my parents have been through too. I found myself thinking about big moments, like my back surgery, and how my family coped with everything around that time. It was emotional at points, but I really enjoyed the process because it helped me see how much resilience and love have shaped my life.
My aunt is an editor and publisher, so she helped me edit the book, send it to print and even get it on Amazon. Holding the finished copy for the first time was an amazing feeling.
More than anything, I hope my book reassures people not to panic when their child is diagnosed, and helps them understand that although life may look different, it can still be full, meaningful and hopeful.
Here’s a sneak peek from my book
I’ve always been a creative person – from scrapbooking and bullet journaling to drawing and painting. After I left school, I began painting more regularly, especially using watercolours. As I built up a collection of pieces, friends and family started encouraging me to sell my artwork as cards and prints. Sam even suggested I could set up a subscription service, where people would receive a set number of cards or prints each month. So, I decided to go for it and launched my own small business: Handmade by Erika Daisy Wrate – or Handmade by EDW.
As part of the subscription, I chose to donate a portion of the proceeds to Muscular Dystrophy UK – a cause that’s close to my heart. I do all my artwork in my home office, where I’ve got a shelf (put up by Dad!) to display some of my favourite pieces. A few of my paintings are even framed and hanging in my bedroom.
When I first started the business, I wasn’t sure how I’d manage everything alongside my other commitments, including my sessions with my home tutor. But over time, I’ve grown more confident and found a rhythm that works. A lot of my inspiration comes from places I’ve visited – especially for my landscape paintings. One of my favourite techniques is wet-on-wet, which creates soft blends and smooth transitions across the page.
I’ve had some lovely messages from customers – in person, over social media, and by email – saying how much they enjoy receiving my artwork. Knowing that something I’ve created can brighten someone’s day is one of the best feelings, and it motivates me to keep going.
Looking ahead, I’d love to expand the business further. One of my future goals is to take part in craft markets and events, where I can meet customers face-to-face and connect with other creatives. I think it would be such a nice way to grow Handmade by EDW and share my work with even more people.
Although my muscles may not work the way other people’s do, I’ve never let that define me. Over the years, I’ve found so much joy in the things I love, whether that’s baking, crafting, music, or spending time with my family and friends. I’ve also learned that having a disability doesn’t mean missing out on things; it just means finding creative ways to make them happen.
Looking back now, I realise how much my journey with CMD has shaped me – not just in terms of the challenges I’ve faced, but also in the strength, resilience, and incredible experiences it has brought into my life. And if there’s one thing I’ve learned, it’s that sometimes the biggest obstacles can lead to the most unexpected and beautiful adventures.
Erika's Autobiography
Learn about Erika’s life growing up with congenital muscular dystrophy.
