January 2021 started out as a battle that was bittersweet.

In all my years of living with SMA, I have never dreamt of the opportunity to help my body to function in a way that’s going to prevent further deterioration of my muscle weakness. Along with many of my dearest friends with SMA, SMA UK and MDUK, we fought for months for those in Northern Ireland to receive access to Risdiplam. It was a journey of such mixed emotions, it hurt that we had to fight so hard for something that ultimately has the potential to change the course of our lives. Lives that have had to fight for everything up until this point. I have experienced so many positive outcomes since being on Risdiplam. I have more energy; I have gained muscle strength and I have grown a little bit more confidence in my myself to deal with future challenges!

In February, I hit the submit button on my PhD and completed my Viva (spoken exam) just a few weeks later. After spending many years studying resilience in families affeceted by Duchenne Muscular Dystrophy (DMD), a final 3-hour exam and an awful lot of chocolate consumed, I was officially named Dr Glover. Somewhow, all the stars aligned, and I got a job with Pathfinders Neuromuscular Alliance as a research officer. A job that has given me the opportunity to continue researching the lives of those living with DMD and work in an environment that is supportive and understanding of my own circumstances of living with SMA.

And then came the biggest new beginning in June. I married a man that I love, surrounded by some of our closest friends and family in my mum’s back garden. We started our new beginning together, promising our love and friendship to each other forever.

So, to conclude my new beginnings in true academic style, there’s been some editing of genes, name changing from Miss to Dr to Mrs, and there has now been an official start to the new chapter of my life with Colin.

First published September 2021