My name is Eden, I am 20 years old, and I have SMA Type 3.

I was wrongly diagnosed with clicky hip (congenital hip dysplasia) and muscular dystrophy at 2 years old before correctly being diagnosed with SMA at 2 at a half. I received excellent care from Great Ormond Street children’s hospital, this led to me even looking forward to hospital appointments, not something that many children do.

I went to my local primary school which was very small, and I never really had a problem with mobility. I never felt any different apart from not being able to keep up and falling over a lot more than everyone else. It wasn’t really until I went to secondary school where I noticed the difference.

My secondary school was much bigger, so I had to use my manual wheelchair. My arms were never strong enough to self-propel so I heavily relied on my friends and learning support assistants to get me from lesson to lesson. I felt like I really lost my sense of independence. Surrounding myself with good, supportive friends that I could talk to really helped me through school. Focusing on my studies as a distraction from the physical aspects I couldn’t do also really helped. I was always given the choice as to whether I wanted to join in P.E lessons, whether this be hitting the ball in rounders and having a runner or keeping score. Sometimes instead of P.E I would have an extra lesson of my favourite subject: food tec. Having a choice on what I wanted to do, depending on how I felt that day really helped me feel included and in control.

At the age of 16 I learnt to drive through the Motability scheme. This was a major benefit to me, it made me feel more independent and confident again. I got my first car at 16 and after an assessment it was decided an automatic car and license would be best for me. I am very fortunate that I have kept quite active. I found a synchronised swimming team near me that were very accommodating to my needs which I believe helped maintain my strength and confidence. I swam there twice a week for 5 years before moving to university to study psychology.

Moving to University was a major step for me. I go to the University of East Anglia as it is a campus University, and the student support service was excellent. I decided to get an electric scooter to get about campus. The freedom this gave me has been largely beneficial. I was given an accessible flat where all the door where automatic and my room was large enough to store and manoeuvre my scooter. Meeting new people at university made me more open to talking about my SMA. I created an Instagram page, that you can view here called livingwithsma3 in February 2021 where I started to share my experiences. Growing up with SMA I never knew anyone else with it but becoming a part of the SMA community and reaching out to people who are experiencing the same or similar has really helped me. I’m very grateful for my friends and family who have continued to support me every step of the way.

First published: 12th August 2021