Party time for children with PKU
A very special party is taking place at 17:00 today (Thursday) at the Norfolk and Norwich University Hospital for a group of 15 local children affected by PKU.
Dieticians at the hospital have prepared all the food for the party – including cakes baked with an egg substitute – because these children could suffer brain damage if they do not keep to a special low-protein diet. Foods to be avoided include all meat, fish, cheese, nuts, dairy products and even normal bread, biscuits, pasta and chocolate.
PKU is a hereditary disorder which is diagnosed through the Guthrie test, a heel prick test taken in the first two weeks of life. National screening was introduced in 1969 and is a medical success story, as children with PKU can now be helped to lead full and normal lives.
Nationally, one in 10,000 children is affected by PKU and last year, four babies were born with the condition at the Norfolk and Norwich University Hospital.
Dietician Rachel Pereira commented: “We decided to hold the party so the children and their families could meet and socialise with others affected by this condition.”
“The diet is extremely restricted and must followed closely to achieve the best possible outcome. However, it must be remembered that these children grow up with the diet and develop quite different tastes from those who do not have the condition. Also, the most crucial time for brain development is in the first few years when parents are much more in control of the child's diet.”
You are invited to send a reporter and photographer to the party at 17:00 in the Education Centre, East Atrium, at the Norfolk and Norwich University Hospital, Colney Lane, NR4 7UY
Notes for Editors
The protein we eat is made up of 20 different amino acids. PKU occurs when the enzyme that breaks down the amino acid phenylalanine is absent and levels of this amino acid build up in the blood.
Chronically high levels of phenylalanine cause severe brain damage so regular blood monitoring is required. In infants and small children, this monitoring is carried out on a weekly basis.
Media contact: Sue Jones, 01603 289554