Time is so precious for those most at risk

MY name is Declan Spencer and I have Duchenne muscular dystrophy, a disease that causes muscles to weaken and waste over time.

Now 22, I was diagnosed aged eight, at which point my mother, Alexandra, was told I was unlikely to live until my 18th birthday.

Over time I have eventually lost the strength in my legs and now use a wheelchair full time.

My mother and myself have been shielding together during lockdown. It has meant that my muscles have wasted away further, robbing me of my ability to drive.

When I found out that someone with my condition was able to drive using hand controls, it was amazing for me to hear, knowing I could do something that was the same as other people were going to be doing as well. It made me feel somewhat normal.

After a year of learning and waiting for my adaptive van, I finally was able to drive. It felt so good knowing I could be independent. I used to drive all the time. Taking my friends out and listening to music was one of the first times I felt like everyone else.

But then my condition caught up with me again.

Towards the end of last year I had to stop driving because it was too cold for me, which made my hand very stiff. I was hoping to get back driving when spring started, but then lockdown happened.

Sadly, after restrictions eased I was too weak to drive. Having the knowledge I couldn’t do it any more was worse than the feeling of being in lockdown.

For many people my age, that was the worst time for them: not being able to go out to pubs, restaurants and bars. For me, this time of year was my version of normal, but I had to shield, and now I can’t even go out as it’s just too cold for me to function.

I would like people to think for a minute: it’s not just older people who could die from coronavirus.

Young disabled people are having to stay inside as the risk of them getting Covid-19 could be deadly, too.

So please, stop breaching restrictions. Just listen to the rules so you can enjoy the rest of your life.

The longer this goes on, it’s taking up the short time some people might have on this Earth.

Declan Spencer, Syston