Gary Conway was diagnosed with phenylketonuria  soon after birth and he has had to follow a restricted diet ever since.   “It’s important to be positive and follow the diet correctly,” he advises. Photograph: Dara Mac Dónaill

Most parents try to ensure that their children get enough good quality protein in their diets, but the opposite is required for anyone with the rare g(...)

Heel prick  test to detect PKU. Photograph: Simon Fraser/Science Photo Library

Families of people with PKU, a rare metabolic disorder, have expressed disappointment after the only drug treatment available was rejected by the Heal(...)

Lyndsay and Paul Price, with their children, James (13) Alex (8) and Andrew (5), in Shankill, Co Dublin. Photograph: Dara Mac Dónaill

For most parents, the heel prick test is one of those forgettable, standard procedures that their newborn baby goes through during the early, hazy day(...)