First National PKU Camp

Phenylketonuria (PKU) is an inherited metabolic disorder that affects approximately 1: 10,000 children born each year in Australia. It is detected by the Newborn screening laboratories around the country.

Before PKU was identified in the early 1960's children born with the disorder suffered severe intellectual disability. Children who are born with PKU now follow a strict diet low in phenylalanine, one of the essential amino acids, and with good dietary compliance enjoy normal health, growth and development.

The first ever national camp for children with PKU will be held from Wednesday 5th to Sunday 9th July. Fifty children ranging in age from 8 to 18 years with PKU from all over Australia will attend the camp, at the Sydney Academy of Sport in Narrabeen.

The camp will be run by staff members of the Genetic Metabolic Diseases Service at The New Children's Hospital with some help from staff from the Royal Children's Hospital in Melbourne and Adelaide's Women's and Children's Hospital. Volunteers from the NSW PKU Association will also assist.

As PKU is managed by diet it can be difficult for parents to ensure that their child follows the strict diet - which excludes meat, cheese, bread, eggs, fish, ordinary milk and some vegetables.

The camp will provide the children with the first chance to meet nationally and it is hoped a network will be established between the parents who will be attending the PKU Conference on Saturday the 8th July at Pittwater RSL.

For more information please contact:
Madeleine O'Rourke, Public Relations
Ph: 9845 3580 or via pager 9845 0000.