Jodie's story: at school it's hard to concentrate

I am a 14 year old young carer. I care for my brother Rocky who is 8. Rocky suffers from a very rare genetic condition called Peters Plus Syndrome.

This condition mainly affects his eyes but he has many health problems. He has dwarfism and will have for the rest of his life. He is about the size of a 2-3 year old at the moment. Nobody can tell but he probably won’t grow much bigger. He was born with a cleft lip and palette and a malfunctioning kidney so he had half a kidney removed shortly after birth. He cannot eat so he is fed via gastrostomy (a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening into the stomach. ) He also has a delayed mental age of about a 4 year old. He is incontinent so he has to wear a nappy. Throughout his life he has had over 40 operations and there is still more to come. Most of these operations are on his eyes because he has Peters Anomaly of the eye. He is registered blind but he does have some basic vision.

When I get up in the morning I have jobs to do. I get myself ready and help my mum get Rocky and my two younger brothers ready for school. Rocky is very dependant so he requires 24 hour care and has to be helped doing the simple things.

At school it is sometimes hard to concentrate. Rocky has to go to hospital a lot and it is usually a long way from home. I always worry about him but I know he is being looked after. I can’t really talk about it with my friends because they don’t really understand what it is like being a carer.

When I get home, my mum is usually out picking my two younger brothers up from school. I have to get home to look after Rocky. He comes home on a minibus supplied by the school so I don’t need to worry about getting to his school which is good. When he comes home I have to change his nappy and his clothes and put him on his feed.

My mum is a single parent so it can be hard for her to get all the jobs done. If my mum is busy I will cook a meal and I will give Rocky or the other boys a bath. The house also needs to be tidied up because if something is left on the floor Rocky wouldn’t see it and would trip over.

My mum doesn’t have a car so it is hard for us to go out as a family. If we do go out for the day it is quite rare and it also needs a lot of organisation because Rocky has to have a lot of things with him whenever we go out.

I go to a Princess Royal Trust for Carers young carer’s project in the area I live in. I really appreciate the project because it gets me out of the house and we do really fun things. I can talk to other young carers in a similar situation to me so they really understand what it is like. It is also good to talk to the adults on the project because sometimes I just need to offload and talk to somebody who is not in our family situation. When I try to talk to people like doctors or social workers some of them don’t really listen to me because they think I am too young. But at the young carers project you can voice your opinion and people actually care what you think.