Finding cures for children's genetic diseases

Phoenix's Story

When Phoenix was born, his mum, Tenealle had no idea that anything was wrong.
He was her second baby and was in such a hurry to come into the world that Tenealle gave birth to him at home, delivered by her partner Daniel.

But when Phoenix was just seven days old, doctors told Tenealle that his heel prick test had shown an abnormality.

Little Phoenix was diagnosed with PKU –  a genetic condition that means that he is missing the enzyme in his liver that helps his body break down protein.

‘Phoenix’s diet has to be very closely managed. He can eat minimal foods with protein in them; all his bread, rice and pasta need to be specially ordered for him and even some fruits and vegetables are off limits’, says Tenealle.

‘He needs a lot of supplements to make sure he is getting everything his body needs’.

Phoenix's blood test are conducted weekly by Tenealle and Daniel. The tests are sent away to  a screening programme in Sydney for testing the levels of protein and supplement intake for the following week.

His diet is also planned and closely monitored on a week to week basis.
 And if Phoenix’s diet isn’t strictly followed, it could mean seizures, cancer, irreversible brain damage, or ultimately death.

“Certain things are hard…when he had his birthday last week we had to get everything ordered specially because he can’t have any of the normal cake ingredients."

But, Phoenix is a happy little boy. Despite the challenges he faces, he doesn’t let anything slow him down. He goes to childcare and enjoys playing and running around like a normal one year old boy.

One day we will beat childhood diseases. Until then, we need your support.

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