Three year old Stanley Brown is one of about 2000 children in the UK who have phenylketonuria, (PKU for short), a metabolic disorder which is diagnosed in new-born babies by the heel-prick test. People with PKU have an enzyme deficiency which prevents them from processing protein properly. As a result, children like Stanley have to eat a diet containing almost no protein. Meat, fish, dairy foods and eggs are banned, but also everyday foods like bread, pasta and rice need to be severely restricted. If children stray from their strict diet they risk irreparable brain damage. The diet needs to be continued throughout life.
Stanley’s family and many other people living with PKU have challenged their MPs to follow the restrictive diet for a day.
Stanley’s mother Jessica Brown of Halesowen says of the challenge: “The PKU diet is incredibly hard and complex and MPs are going to find it a shock. Even vegetables need to be restricted. Eating out and spontaneity is virtually impossible and the impact on childhood and family life is hard to measure.” Jessica is very frustrated that a drug treatment for PKU called Kuvan is not available in the UK. Kuvan would help Stanley have a more normal diet whilst protecting his brain development. The NHS is due to re-evaluate the funding of Kuvan this year.
The diet challenge takes place on International PKU Day on 28 June which is a working day in the House of Commons. Conservative MP James Morris will be taking up the challenge on behalf of Stanley who lives in his constituency of Halesowen and Rowley Regis. Liz Twist who represents the North-East constituency of Blaydon is taking up the challenge on behalf of her 12 year old constituent Archie. Her entire office staff will be joining in too. Her Labour colleagues Ian Austin of Dudley and Nick Thomas-Symonds of Torfaen will also be following the dietary regime to support constituents with PKU. MPs have been tweeting about their problems finding food to eat through the day.