DAILY LIVING & MOBILITY

Ataxia makes me who I am

Rare Disease & Syndrome

Rachel O'Connor

What is Ataxia?

Hi, my name is Rachel and I'm 16 years old. I have a very rare disease called spinocerebellar ataxia type 13. It affects my balance, coordination and fine motor skills mainly. As this is a neurological condition it makes me tire more quickly, so school is hard for me. Getting up early, spending 7 hours at schools and doing 2-3 hours at homework.  I have a scribe at school because writing is difficult.  

I couldn't really play with 'Legos' growing up (and still can't) because of my fine motor skills. At the time I just thought it was hard for everyone but I didn't understand why everyone loved it. I wanted to play with it because I was creative and liked making my own things (I still do today), but I could only play with it for 15 mins before my fingers would give up. Tying buttons is also difficult for me. When I fiddle with small things like Lego, my tremor gets really bad.  

An example of my poor coordination is when I try to plug my charger into my phone or when I plug my memory stick into the computer.  Another thing I find difficult is when I try to kick a ball, it would rarely go to the person in front of me, it could go in any direction! Maybe it's because I'm focusing so hard just to kick the ball, I forget to aim.   

You might ask would I like to be 'normal'? I say no. Ataxia makes me who I am.  I am very grateful for what I can do, my ataxia could be a lot worse. If I didn't have a disability I wouldn't have met all the amazing people I know and most importantly I wouldn't have got Justin, my wonderful stability assistance dog. He helps my balance and walks with greater ease. He also has boosted my confidence and self-esteem. I couldn't imagine life without him. I love him so much.  

In life, people will have it better than you and people will have it worse than you. What you have, or what you don't have to determine your happiness. For example, if you're rich it doesn't mean you'll be happy. You have to choose happiness. even though sometimes it might be hard. Be grateful for what you have. Appreciate the little things in life.

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