ROdown Blog
Connecting with understanding friends for support
My name is Emily and I’m a 15 year old who cares for my older sister, Kaia. Kaia has Rett Syndrome which is a rare neurological disorder and is unable to do anything for herself.
I live in a remote community called Nhulunbuy and it is not easy to get respite here. We are about 1000 km east of Darwin and staffing at the only organisation that is able to provide respite is quite lacking and therefore the respite the other carers and I receive in Nhulunbuy is very slim.We are often invited over to Darwin to join them in respite activities which are very rewarding but due to lack in money, this doesn’t happen very often.
Although living in a small community can be frustrating respite wise, it is great for creating support groups and friendships in other young carers. I have got to know heaps of other carers that I now speak to on a regular basis and this has allowed me to talk about my caring role with others who understand what I go through such as: assisting my mum in getting Kaia ready for school, looking out for her in the playground at school, helping mum and dad feed, water, shower and toilet her - and babysit when mum and dad go out.
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5 Comments
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anna
over 2 years ago
Reply Reportthanks so much for dropping in to RO and sharing your story Emily and for giving us an insight into your busy life as a young carer - you are an absolute inspiration and it sounds like you are such a huge help in your family. :)
Ophelia.L
over 2 years ago
Reply Report@J_Jay,
J_Jay
over 2 years ago
Reply Reporthey Emily
i'm a young carer to
your stoy is very inspiring
J-Jay:):)
Michelle-InspireStaff
over 2 years ago
Reply ReportThanks for sharing your story Emily. I found it really inspiring that you could find some positives in your experience - such as creating support networks and friendships.
Good luck to you and Kaia :-)
Chey
over 2 years ago
Reply ReportHey there Emily ,
Thanks heaps for sharing your story,So young but so wise at the same time :),Your sister is lucky to have you not only as sister,career but also by the sounds of it a full time friend :).
I hope that careers week will prompt the fact Young careers need more support etc and that sometime soon funding will go into helping people like yourself and commuinty to have respite in your area or close enough to access.
Im glad you have found people in which you can speak openly with who understand you and well done.
Once again thank you so much for your story.