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Letters to my Younger Self: Besnike Mustafi

Welcome back to our series "Letters to my younger self".

If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?

In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.

This entry comes from Besnike Mustafi, a STOP SMA North Macedonia and SMA Europe’s volunteer.



Hi little Nike,

I’m here trying to find some words to write to you, to give you strength, whilst I have it, because now I’m remembering the way you see life and the way you enjoy it. So, I’m taking strength from you, so I will suggest something you will always have to remember:


Chapter 1

Hi Nike,

You are in your 10’s, the years are going so fast and you are growing up. How is your life going? I see you are a little stressed lately. You have started to change and you like to be called Beska now.

I like this new name, but the thing that makes me still refer to you as Nike is the enthusiasm

that you had for life when you were that little Nike. I know that life is hard when you see yourself as different from others. I understand you are embarrassed when you stop in the middle of the class to rest so you can take the strength to walk to your chair, or having stairs or having ramps just for you. But believe me, these aren’t things you have to be embarrassed by. They are things you have to be proud of—tell people that you can do everything, tell them that even when your body is testing you, is trying to get you down, you will always stay up.

You got a wheelchair, and you aren’t sure how to feel about the situation. I’m proud you choose to express your positive thoughts even when you see your mom crying. Inside yourself, you smile, laugh and scream that you are happy for your wheelchair and the way you can drive.

Believe me, this is the best way you can live your life—sharing positivity will bring happiness inside you and if you are happy and have motivation, nothing can stop you.

Girl, I know you are strong. Anyway, I will give you the right to cry late at night but I am waiting for you to be stronger the next day.

Chapter 2

Hi Beska,

Sorry to start the letter this way but I’m a little upset with you. How can you start high school with the stress of being a girl in a wheelchair when you know yourself, it does not matter how people see you, what they say and how they react.

I know that was just a short phase and you got yourself together immediately, but still, I’m asking you to never forget who you are and where you come from. It’s not about the place, it's about your mindset, it’s about the way you choose to live your life.

I see you now enjoying high school, but I also saw that one night when you were crying because you weren’t able to be with your friends in that “X” coffee because it was not accessible.

I understand that feeling, we still get through that sometimes. But I’m here promising you that even while the world is not designed for us, I, as an architect student, will be maximising myself for us and for people like us to live as comfortably as anyone else.


In case you wanted to know, you will be so confident on the first day of university, you will have a small circle of good friends, you will start working towards your goals and life will start to make sense…


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