Hannah’s story

Elsie using her tablet
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When I was small, my biggest aspiration was either to be a singer or to open a shop, but not just any old shop, a shop filled with Sylvanian Families – small animal characters. I was obsessed with them and still have them to this day.

However, my ambition soon changed, when I was introduced to the wonder of books and storytelling. I remember reading my books at bedtime with my dad for many hours, memorising the words of bedtime prayers. I loved it, and I wanted to become an author myself.

Nevertheless, this idea also slowly drifted away and instead I found a passion for photography, after I was gifted a digital camera for my tenth birthday. I created my own Flickr account, where I updated my new photography online contacts about my latest snaps. I became fascinated by Flickr artists and wanted to be just like them, creating similar surreal images. After that my passion for photography grew, so much so that I decided to study it for college and then university, gaining a 2:1 degree in 2016.

Of course, this didn’t come without its challenges.

At birth I was diagnosed with Congenital Muscular Dystrophy, a muscle wasting disease. I came out blue and floppy, and the doctors didn’t expect I’d survive. Lo and behold I did, despite an accidental broken femur in hospital at birth, and then being the youngest person in Gallows Traction, ever!

The most memorable – but not necessarily loveable – part of my childhood was wearing a back brace since I had scoliosis: a curvature of the spine. Throughout these early years, I was plagued with a sweaty hard plastic brace, which buckled up on the sides. It wasn’t very flattering, but I got used to it. I remember going in for my plaster casting every few months, picking the pretty colours and butterfly patterns from the array of customisable options. Luckily, primary school was very accommodating to my disability needs and I had physical help in the classroom from a lovely assistant.

At age 10, I had life-changing back surgery to correct my scoliosis, at Stanmore hospital. It was the most hard and painful two weeks of my life, but I remember making friends with patients, and feeling determined to get well and get home quickly.

The surgery for me really changed things, as I no longer had to wear a hot, sweaty, unbearable brace. I was free and taller because of the surgery. My back was no longer a bent S shape.

Right now, my main gripes with disability is my ventilator that I have to use at night, to help me breath and flush the CO2 (my CO2 at night gets too much so I need to control it by taking bigger breaths). It’s quite hard to get used to, despite trying many masks and ventilators.

My life with a neuromuscular condition in pictures

Hannah in a garden
Hannah in a bar
Hannah on a night out
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