ARPKD

None of this would be possible without that selfless act

By Alise

I was born with infantile polycystic kidney disease (ARPKD). It was misdiagnosed a number of times before my parents Kim & Dennis took me into Westmead Children’s Hospital. This is when we met Dr Elizibeth Hodgson and Dr Michael Stormon who gave the correct diagnosis which was infantile polycystic kidney disease.

I spent years in and out of Westmead Children’s Hospital and had some horrific times. I would vomit blood to the point I would end up in intensive care fighting for life. I had infection after infection including septicaemia with no known reason as to why these kept occurring. I had a number of surgeries just to try and keep me alive, ultimately, I needed a kidney transplant.

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A Sister’s story

Guest Post By Mel Cornell

My younger brother was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD). The doctors had assured my parents that it was unlikely he would survive the pregnancy, and once he was born it was clear that every minute was precious.

Though most of it’s a blur, I will never forget the constant visits to the hospital and the endless amount of needles. We were very lucky that he continued to fight the disease and as time went by my sick baby brother soon wasn’t a baby anymore.

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