When Zeke Harrison was just days old his mum, Jazmin Hall, knew there was something wrong with her new baby boy.

Jazmin spent Zeke’s first days trying to work out what was causing her son’s symptoms, but it wasn’t until The Royal Children’s Hospital (RCH) called with the results from Zeke’s newborn screening test, that she began to get some answers.

The heel prick test, which is done in the first two or three days of life, was abnormal and an ambulance was sent to the family’s home immediately. Zeke was diagnosed with the rare metabolic disorder, maple syrup urine disease, which prevents the body breaking down parts of proteins.

“All I knew was that an allergic reaction to protein was causing his brain to swell, and if they didn’t do something quickly he would die,” Ms Hall said.

Zeke, now 21 months, can eat only 7g of protein a day and must have a high fat, high calorie diet.