Noah, 11, is the only child in the world with this type of rare disease

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When little Noah Barlow came rushing into the world at 29 weeks and weighing just over one kilogram, his parents had no idea of the harrowing journey that lay ahead.

“He was an IVF baby and lucky egg number 13, and in the dramatic fashion that we were to give life, he decided not to wait and came 11 weeks early”, Melbourne mum Kat Barlow tells 9Honey Parenting. “It soon became apparent that a lot of things were a struggle for him. But all the initial signs of slow development were put down to him being a preemie.”

Noah was allergic to everything. “He never really fed properly,” Kat explains. “Every single food we ever gave him he was allergic to and put him back in hospital. After trialing 60 different foods he was fitted with a feeding tube and special formula.”

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