Duchenne from the sidelines, a sibling perspective

Duchenne from the sidelines, a sibling perspective

Written by Logan Kaye, Duchenne sibling

Whenever you hear about a family who has been affected by a medical condition, you always feel an overwhelming wave of sympathy for them. I remember seeing stories on the news or on youtube about people who live with medical problems that have changed the way that they live their lives, and I remember always feeling sorry for them, but I could truly never grasp their situation. After all, I was mainly surrounded by people without these medical problems, and I could never picture it directly impacting someone close to me.

That is until about 5 years ago, when my younger brother Riley was diagnosed with Duchenne muscular dystrophy. At the time I didn’t know what this was, but after talking with my parents and doing my research I realised just how serious this was. I remember going up into my room and just crying, not for myself but for Riley. I had always wanted a younger brother, and when I finally get one I learned that he won’t be able to do many of the things that I took for granted when I was growing up. I never considered learning to ride a bike or playing football to be a big deal, but my brother would probably never be able to do these things.

I truly cannot find the words to describe that feeling, the feeling of something you only heard about on the news affecting someone you hold dear, the sudden realisation of all the things you took for granted that others will never be able to do. At the time I just wished that there was a way that Riley could live a life like mine and do all the things I took for granted growing up. I so badly wanted Riley to be “normal” and for my parents to not have to spend sleepless nights looking after him, to be able to go on holidays and for him to experience everything that I had.

I think the worst part that i had to overcome was all of the medical equipment that Riley would need in order to live his best life. I still remember seeing Riley in a wheelchair for the first time and just feeling terrible. Never in a million lifetimes would I have predicted that a sibling of mine would have to receive all of this equipment and the more we received, the more the house felt less like a home and more like a hospital. This is a feeling that i have only been able to shake recently. 

Here’s the thing though: Despite all of these negatives, Riley is still an amazing person. Even on the hardest days with him, seeing his grin shine on his face is enough to make those hard ways worth it. I still remember longing for Riley to be “normal” but he is. Riley has severe autism, he is non verbal and is not aware of the fact that he is different from others. To him this is just how life is. I think this was one of the biggest factors that helped me embrace this life. If Riley can be happy living with his condition, then so can I. Finding a good school for him also helped, as he now goes to a school which accommodates his needs, meaning that it no longer feels like Riley is different at his school.

If there are any other siblings of someone living with Duchenne reading this, just know that I am so immensely proud of you. This whole experience isn’t easy, and most other people will not understand what you do on a day to day basis. But I do. You are amazing, so don’t let the bad days define who you are.

To anybody living with Duchenne reading this, I am equally as proud of you. If you are anything like my brother Riley, you haven’t let it define who you are and you’ve gone on to live an amazing life despite your condition.

Do not let a condition define who you are.