The only one in Australia

My name is Izzy, I am 17 years old and I am a Clinical Support Worker.

I am the second eldest in my family. I live at home with my mum, little brother and baby sister. For the past 3 years I have helped my mum who is a single parent care for my baby sister and help parent my younger brother.

My baby sister suffers from a life limiting condition called “Pontocerebellar Hypoplasia Type 1b”. She is 1 of 6 in the world and she is the only one in Australia. Her condition means she is non mobile, non-verbal and suffers from seizures along with involuntary movements etc.

She requires daily suctioning, dozens of medications, 24/7 oxygen, mic key button feeds and much more. Both my mum and I will care for her throughout the day and night whilst we also take care of my little brother.

My baby sister is frequently in hospital so when this happens mum stays with her while I stay home and take care of my brother.

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