I am unique

My name is Rafqaa. I am 16 years old and located in NSW. One unique thing about me is that I enjoy going to the farm with my dad.
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I currently care for my sister who I have been caring for 11 years. My sister requires care as she has Sanfilippo syndrome which is a genetic disorder. It is known as a child disease as most children do not make it to adulthood.
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My responsibilities as a young carer are tube feeding, nappy changing and providing medication. However, at times I also spend nights in the hospital when Mum and Dad get really tired. Just like me, I imagine other carers would give medication for their cared ones and experience many hard times.
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On a good day, caring for my sister includes playing with her, being able to put her in a wheelchair and taking her outside and being able to stay at home and not rush to the hospital. During a bad day, caring for my sister includes lots of seizures, respiratory problems and rushing to the hospital.
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Because of my caring roles, I am unable to go overseas. I am unable to go out with friends and family all the time and at times, it can get hard for me to complete homework.
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Being a carer has changed my life as I am able to learn new skills. It reaches me resilience and makes me grateful and everything in my life. I would cope better with my role if I spoke more about my struggles as I tend to keep it all to myself at a time when I don’t know how to express my feelings.
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Being away and not being able to help my sister makes me feel lonely. It becomes a daily routine looking after her so sometimes it becomes empty when she is not at home. I choose to care for my sister as it is the best way to appreciate everything I have and it’s normal for me.
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Being a young carer has taught me that it is not about doing something because you know it’s right, it’s about doing it because you want to and it taught me to appreciate everything I have and not let go of it.
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From this story, I would like others to realise that you are not alone and that other people also go through similar situations. My piece of advice to my fellow young carers is that every bit of experience you take from the situation teaches you resilience and gives you appreciation.

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