When little Ethan was born, his family had no idea what challenges their little boy would face. 

He seemed happy and healthy and was a welcome addition to his parents and siblings. 

But when Ethan was 11 months old, his mum knew something was wrong. Ethan wasn’t crawling, walking or even sitting up without support. 

Ethan was admitted to hospital and after 7 blood tests, 4 urine tests, 2 stool tests and countless doctors, his mum Amanda was told that his kidneys were leaking all the essentials that Ethan needed.

And just two weeks before Ethan turned one, he was diagnosed with Cystinosis.

‘I had never heard of it before… I looked it up on the internet and I felt like my heart had been ripped out and my world was falling apart. It was one of the hardest days for me… I held Ethan tight and told him we would get through it together’, said his mum, Amanda. 

Cystinosis is a metabolic disease that causes an abnormal buildup of the amino acid cysteine in different organs in the body including the kidneys, muscles, eyes, pancreas and brain. 

Without treatment some, or all, of his organs will fail. 


Ethan has trouble putting on weight so he is fed through a gastronomy tube in his little belly. 

The surgery was extremely tough on Ethan, and his mum.

‘The first night of surgery was so hard… my little man was begging for water but he was nil by mouth so I couldn’t give him any. I ended up wetting my finger and wiping them over his lips and he kept poking out his tongue trying to get the water’. 

Ethan’s disease is very rare with only 37 people diagnosed in Australia. He has regular blood tests and monitoring to make sure he gets the treatments he needs to fight this. 

But Ethan is still a happy little boy who has now started crawling, walking and even saying a few words.

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